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January 2, 2006 A wonderful New Year to Celebrate! There were many times during 2005 that I thought I would not live to see 2006. Those were my dark days, but today, a new year, means more time with my Lord here on earth to enjoy just being alive today. I have been doing well and have enjoyed being a social butterfly. So many parties this Christmas season stretched me thin. Our own Christmas open house would not have been so wonderful were it not for Donna & Jim Price, and Leah & Austin Bush. They came and did everything I was not able to do and their acts of kindness and unselfish giving, was a true Christmas gift to Brian and I. Thank yo It's been almost 4 weeks since I was discharged from Duke and I am on a rotating antibiotic cocktail orally and doing well. I am using the new Pulmonetic LTV 950 ventilator each night and I have gotten used to it. The only annoying thing is the screeching alarm. But then in life saving situations, this is a must. However, in my home, it is not necessary so I downloaded the instructions to change the volume and I have lowered it to 60 db now, and not the 120 it was set at. The most obvious benefit to me since using this vent, has been waking up without pounding headaches, which are caused by having too much carbon dioxide and not enough oxygen in your blood. It's not like BINGO! Magic new lungs. Nope. But my mornings are not "fuzzy" and I can function right off the bat. Now that is a welcome benefit for me. Here is my Christmas gift....a new Ventilator.
January 6, 2006 I am going to play around with redoing my web site so I'll be off the net for a little bit. Could be for 2 months or so, but I am available via my E-mail link. I have new software to integrate into my web page so I have to "play" with it and "tweak" it to get it right for me. My silence is not to be taken as "I'm dead". I'm just working on upgrades. Love ya, Lori End of January, 2006 Well where have I been? I had another birthday (42nd) and had to be admitted to Duke for another round of "Kill that Bacteria"! I still have no IV access, so of course, that meant the intern had to find my femoral vein and take a stab at it. It was past midnight and after the intern failed twice, the resident tried 3 times, as I was pleading for her to stop. I told her she was hitting my nerve as it felt as though my leg was shocked from groin to tipsy toes. She smartly told me that there are no veins in the crotch area, so to stop being a cry baby and just take some Ativan for anxiety. I told her to leave my room and that was all he was going to touch me. The next morning on rounds, another Resident stepped up and took a stab at it. BINGO! Using doppler imaging at my bedside, he was able to visualize the vein and with a lot of force and Xylocaine, he got it. There are times when even these sites are no longer working for me, but for now, it worked. Thank you Jesus! I slowly recovered and was released from Duke 24 days later. Brian came down on weekends and our Pet Sitter took care of our 6 feisty kitties. On January 27th, I had a Palliative Pain clinic with Dr. Pasi, who recommended I consider having a subcutaneous pain pump implanted into the fatty tissues of my abdomen with the catheter ending in my lumbar region of my back. This is not what I want, and so after questions, answers and crying, Brian and I left with patient literature, a Video tape and a web site to look into it. Then it was on to the Adult CF clinic with Dr. Peter Kussin and CF Nurse Edana. My visit was better than expected because while I was home, Dr. Kussin had done some investigation and had me booked to have another Medi-Port placed just 3 days later at Duke! He discussed my pathetic "no veins for Lori" cry and this surgeon, Dr. Lawson, examined my MRI vein scans and found that there was just one change in a million that he could hit my left azygous vein and I'd be a proud owner of a new Medi-Port. So I was admitted to Duke on Sunday Jan 29th and went to the OR on Wednesday February 1st, after anesthesia was prepared for my trach issues. I woke up in the PACU in tremendous pain and that meant that I had a new Medi-Port! Amen and Hallelujah! Just another 24 hours to recover and Brian took me home. Yippee!!! But not that quick, girlie! February 2nd= Home! I was discharged home to infuse 2 IV antibiotics through my new Medi-Port. Zosyn was hung every 6 hours and Tobramycin was every 12 hours. Home care came and set me up for this for a 14 day course of med's. The first doses were given at Duke, before I was discharged and I tolerated them well. Later that night, when I infused the pre-med of 25 Benedryl and 25 Phenergan, my left azygous vein was in terrible pain! I slowed down the rate to 5 minutes, but it stung like the Dickens and I cried when I had to infuse it. Hmmm...then the fevers started. The fevers started with my first home infusion and it was 103.4 degrees F. I was allowed to take Percocet 10/325 mg for pain, and then to increase it to Dilaudid 16 mg po for severe pain. Plus, I was wearing those Fentanyl pain patches too. I called Dr. Kussin and told him I was not well, and that my chest was so sore, I could not cough up the junk. It was so thick and rubbery, and it looked like the "Isolation gown Yellow" color . I was so sore, I refused to use the Ventilator at nights as it put in more pressure into my chest than I was comfortable with. So today, February 7, Duke called me at home for an update. I was in terrible pain (it was like a 11 out of 10 on a 10 maximum scale) and the fevers came at about 1PM and stayed until 1AM. Plus I was hoarking out disgusting Pseudomonal bugs. They offered admission to me right away, but I asked if I could try to sleep a little and perhaps feel a little better by morning. They were not too keen on this, but it's a 4 hour drive to Duke and Brian was exhausted from work. So I have my 2 week bag packed and we are leaving at sunrise tomorrow. I'll be admitted to my regular haunting grounds, Unit 7800. Please pray for us, and for the wisdom of the medical team. February 8-18 at Club Duke CF The ER at Duke has metal weapon detectors to enter it. Stunned us to see this is the level of protection our inner city battleground hospital has to hide beneath to keep the staff from being shot in retaliation over gun wars! I was triaged in the Duke ER and then sent to the ICU. I had fevers of 104 degrees and staph in my blood. However, soon the IV antibiotics began to work their magic and I began to feel better, about day 7. Brian was a real trooper and drove down for weekends. Not long after, I was discharged home on IV antibiotics for another 2 weeks. We drove home and when I got home that Saturday, I was tired. All day Sunday was spent in bed, and I was so nauseated that if you moved the bed, I was puking my guts. I felt I had something "Viral" and it would go away. Nope. February 20-March 2, 2006--written after all the drama I was so sick and irritable, I wanted to die. I had a fever and was in bed crying in misery. Every muscle hurt. Coughing was not happening as I was so sore and achy. It was a Monday morning and I asked Brian to stay home with me. I had a little ominous feeling if he left for work, I'd be alone and get sicker. I wanted him to stay home, to keep a watchful eye over me. Here are my thoughts and musings written after I'd been discharged home, yet again:
March 7, 2006 Today I had a good day at home. Thank you Jesus for lifting the mental fog that came with all of this and I am clearly thinking better now. I have been doing all the bills and books and taking care of this house, as I recover. I will be returning to my desk job on Mondays and Tuesdays. Brian has to drive right past my office to get to his office, so for 2 days a week, he will drop me off at work. I know they will find chores for me to do and way to work me. No pansy am I to hard work. Thank you for the many supportive emails and phone calls, from friends who lift us up in prayer and offer to help get me around now that I am on suspension from driving for 6 months. If there are no other seizures, then I will be able to drive again on September 1st. It is a sweet thing when you lose something you cherish and then have to ask the Lord and friend to come help. Now that is faith in action and so many people at our church have stepped up to pick me up and take me places. Thank you Friends! OK....enough for today. Will update more as it comes. Despite all of this hoopla, I am more than blessed by the things that go right in my Christian walk rather than those times when I am in the valley of the shadow of death. Something good will come of this. The Lord predestined this to happen to me, so He has some wonderful plan to come of it. March 25, 2006 I've been quite busy lately so have not jumped on to write more. I know many of you are wondering what's up with me. Well, I have returned to work, doing modified duties. Brian drives me to the office and picks me up. I am grateful to be able to go to work, even though I can't go to death scenes. I still am on time out from driving until at the earliest, September 2nd, and then only if I don't have another seizure. I am seeking the Lord's will and pray that I won't have another seizure so I can return to full Medical Examiner duties. Brian too, prays that I'll not have another seizure, as that last one I pulled on him scared him terribly! Let's not have a repeat. So I am at work, and I have a driver who comes every Thursday for the whole day, to drive me wherever I want to go. I line up all my errands and off we go. She is delightful and we enjoy each other as company. So I schedule all my shopping and appointments on Thursdays. Ladies from my church also gather around to pick me up and take me places. Many have volunteered to drive me, even if it's to get a hair cut or a gallon of milk. Thank you Friends! I have continued to feel well. I have even gone without oxygen for a bit when I am feeling really well and when my oxygen saturations are above 92%. Amen for these few times! As a realist, I know this won't last, but for now, I am enjoying it. Soon, it too will come crashing down and I'll be stuck sucking back 6 liters of oxygen again, but sometimes, even I've had a respite from that oxygen hose, and it feels so gooooood. The job of Cystic Fibrosis is to kill its host, so that is what it will do. I am always reminded of this with each hospital admission for another pulmonary tune up, so that when I have a good day, or a few good days, don't lose sight of the fact that CF is slowly killing me and will one day, win. I have a pulmonary appointment this week with Dr. Randy Garnett and I have nothing to complain about. I have been doing my treatments and therapies and have cleared up the double pneumonia completely, so I feel well. I missed my last appointment with Dr. Randy as I was in the ICU seizing. What an excuse for canceling and giving less than 24 hours notice. Life is getting busy for me and I am so enjoying every day. Each day with Brian is so sweet. He loves me with all my flaws and my fat butt too. Even when I am coughing up gross sputum balls, he hangs right in there with me, handing me a kleenex and going "eeeewwwwww....gross....". He is mine for ever and a day. Jesus is Lord! March 28, 2006 Today I had an appointment with Dr. Randy Garnett. I had to cancel my last visit with him as I was in the ER having a seizure. Anyhow...Brian and I saw him today and I had another good check up. My oxygen sats were great and I was a nice healthy glow of pink. I was not coughing and he said my chest sounded good when he listened. I can lower my Prednisone and taper it down and he suggested that using the ventilator at night has been beneficial for me. He said that he has noticed that my recurrent lung infections are not as frequent and said perhaps the vent was helping with better pulmonary management. Before I went on the vent, I was always on IV antibiotics every month. On them for 2-3 weeks by IV, then off them for 2 weeks before having to go back on them again. We did this marry-go-round for 2 years, and I burned through a few Medi-ports with this heavy usage. Well in the last 4 months since I have had the vent, I have only been admitted to Duke twice for CF lung infections. Plus, I have only been on home IV's once during that time, so something is working. It could also be the rotating schedule of Septra and Zyyvox that I am on....but something is working. Thanks Dr. Randy for sticking in there with me. I am working at the morgue and enjoying some down time at home, which allows me to do things. We are having some landscaping changes done and I have had to pick out trees, bushes and flowers. Whew. I just told the gardner to do it for me and make it work. Make it look like it does on TV...you know...the Good Housekeeping look done by Martha Stewart. My friend Shannon has a birthday today. She is 4 years post double lung transplant for CF. What a miracle that her donor lungs have given her another 4 years of life. I told her today I am happy to be calling her and wishing her a happy birthday, rather than to be standing over her grave crying. Amen for organ donation. It works. Shannon is a living example of this. Thank you Jesus for her life, and for her donor. My friend Billy, from Baton Rouge, Louisiana, is coming for a week to visit. Billy and I grew up together at CF camp and out of all the 100 campers, only 3 of us are still alive. Billy, who is 6 years post double lung transplant, and another camper named Ben, who is also thriving with his new, transplanted lungs, and me. We are the only 3 still alive. Everyone else, all 97 of them, have died. CF has killed most of them. Lack of donated organs has killed others, suicide has killed one, and others have died natural deaths from other things, but the majority of them have died because of Cystic Fibrosis. CF has won. It has done its job...of robbing you of breath, and of killing you...slowly. One day, I too will die. I have always, always thought CF would kill me, but now as I am growing older, it could be other diseases too. What a bummer to think something else might kill me. All I know is CF. Hey...whatever the Lord has planned for me is His good and perfect will. He has had many opportunities to call me home to heaven, yet has always allowed me to live for another day. Many times, I have been on deaths door, yet the Lord has been gracious by allowing me to live. Amen for more time. Must mean I have more things to accomplish while living. Brian needs me, I need him. We need to grow closer in our walk with God, together as a couple. More time please, Lord. I'm not done here just yet. March 31, 2006 We recently had a painting com April 8, 2006 It's Saturday evening, almost midnight, and I can't sleep. So I am up at my computer writing. I had a great week. Nothing wonderful happened to make it super sweet, other than living life fully and praising the Lord for each day. It was a regular week, but then I found something out that made it awesome. Brian says he told me about it a month ago, but not to my recall. Here goes... On the day I had the seizure at home (Feb. 20), and as the 911 folks drove me away, Judy, a friend from our church called, and Brian told her very quickly he had to go to the ER. Well, Judy, then set into motion a series of phone calls that I find so remarkable... looking at it now. From Judy's call, Pastor Moseley, Rod Fombell and Gladys St. Sing, all arrived at the hospital emergency room and gathered around my bed and prayed. My boss(and friend), Donna Price, also arrived. Together, these angels hugged Brian, embraced him in his fear, and prayed for the Lords will to be done. I thought Brian was all alone, scared, frightened and upset. Yes, he was all of the above, but he was NOT alone. God sent His angels to comfort Brian and to help ease his anxiety. Me? I was gorked out and knew nothing of these visitors until recently, like 6 weeks after the fact. Duh!! Brian said he told me, but I have no recall. Still, the amazing thing is that people who love us, were there for us. Brian was NOT alone. God had His perfect plan in place in that He allowed Judy to call at the perfect moment that then allowed these angels to show up at the hospital to support Brian. It was not a chance happening. God was executing His plan for it to be that way, so even though I had a crummy seizure, Brian was not alone. Amen for this testimony of Christian friends who were there when we needed it most. My heartfelt thanks to Donna, Rod, Pastor Moseley, Gladys and Judy for demonstrating Gods love in action. I Love ya! I went to work last week and filed a lot of histology slides, and had fun learning about it as I went along. I am now dealing with some lung goop and will have to jump on it soon if it does not go away. "Go away", lung goop. Maybe I'll be calling Duke for home care IV orders if it does not break. I was last on IV's March 2, so it's been 6 weeks. That's very good for me to have gone this long and be well. Yeah! Amen Jesus! Not much to report medically as I have stayed away from hospitals and sickies for 6 weeks. Still excited about my long, way down the road plans to ocean cruise with my sister Noreen. In October, for 11 days, she (sister #1), husband Gordon, Brian and I are cruising the Caribbean, as long as I am alive. My sister called last night and we talked about how wonderful it will be to do this trip, but she is ever mindful I might be dead before than. Well I told her I hadn't planned on anything of the such, but seeing how wicked things can happen suddenly, it's not beyond me to be dead, but let's not plan on it, OK? Like this seizure....out of the twilight zone it came and who knew? First time for me, so anything can happen. She also reminded me that I've been snatched from the arms of death a few times now, so I am on borrowed time. Gee...thanks sister Noreen for the memories. Taylor cat is at my hand licking my fingers and purring at 65 decibels. She wants some loving and she likes to follow the mouse on my screen as I move it across the monitor. She tracks it with her eyes and then tries to swipe at it. Silly cat. OK....bedtime for me. April 10, 2006 Just 2 days later and I am not feeling well. I woke up intending to go into work today, but I felt as though I was the Pillsbury Puff Pastry boy. By that I mean, very bloated and swollen. Edematous. This is an early warning signal that I am going downhill, and approaching respiratory failure. Isn't it good I can read my early warning signs? Cool. So I called in to work and said I'm not coming in. That is NOT something I do casually. I hate it when I can't go to work. I look so forward to going in but today, I had to listen to my body and let it dictate my day, and it said..."Stay Home". I just took some Lasix to get rid of this excess volume and now I am up every 20 minutes to pee. It's doing its job. Another 6 hours of peeing and I'll feel better. My lungs sound "wet" and "boggy", and my sputum is all over the place with each cough. It flies out my trach and all over my bedding or pajamas. Not a pleasant sight, so I was right to stay home today and fight my CF demons. Brian coddled me and asked if he needed to stay home with me, as my guardian an So I am alone now, with my thoughts and crummy lungs, on this beautiful April morn. I wanted to get to the computer to update y'all and say I am NOT on the brink of death or anything near as dramatic, but I ought to call Duke in a day or so and ask for home IV antibiotics. Try to get treatment for the CF goop now, at home, before admitting I'll have to be admitted. It's coming....down the road...I don't know when, but I've fought the good fight and soon Duke will need to take over. But today, I am here, in my home, surrounded by Taylor girl and Puddy cat, and all is well in my little world. Now...back to bed. Love to my family, Love Lori. XoOx April 12, 2006 I missed another day off work yesterday because I was not feeling well enough to do a full day of work. Perhaps I could have gone in for 4 hours, but I just can't get up and drive around when ever I'd like to, so I stayed home and now, a day later, I feel better rested for not having expended too much energy yesterday. What a loof I am to just veg at home. I should have kicked myself in the butt and gone in, but my mother in law called and gave me her lecture on how I have to rest more and take care of myself now, that Brian's upcoming birthday and our anniversary of 8 years of married bliss, can and will wait until I have had a tune up at Duke. Words of wisdom. Donna Price would say the very same thing. Point taken. Duke has been alerted that I am circling the CF drain and will come in for an admission soon. They work with me to make being admitted as painless as possible and via direct admit, rather than having to go through the Emergency Department every time. I could also just go to the local hospital, Norfolk General, but there are real valid reasons why I ought not do that if I want to live longer. So dear family and friends, when you don't hear from me via this web site for a few days, it might mean I am down at Duke being a good CF adult and have a tune up, or it could be that I am doing so well, I have little to write about, but given the current state of affairs, I suspect it's the former reason. Please keep my medical team in your prayers as they seek to restore me to wellness, and also pray for Brian, as he has to leave me 200 miles away in the care of Duke. Love to you all, Lori May 1, 2006 Home. Home from Duke, finally. I was admitted on Easter weekend, the 15th, and just now feel up to writing this entry. I have been recovering...and lazy. Easter weekend I paged Dr. Peter Kussin, head of CF at Duke, and he arranged a direct admission for me without having to sit in the ER for hours. My sputum was nasty and the smell from my trach made me and the cats gag. You get my drift? When Brian kissed me, he would comment that I had a lovely colony of cepacia growing, so it was time to take care of my declining health and increasing shortness of breath. After a four hour drive, I was quickly admitted to the Pulmonary floor, Unit 7800--Home away from home. I was delighted to find that my primary nurse was coming on the night shift and would be taking over my care. I have come from Yale peds where you were assigned a nurse you liked to be your primary nurse, so when they worked shifts, they were your nurse. When they were off, another nurse filled in. I liked this arrangement and asked Duke if I could do the same there. I happily requested, and was assigned Crystal...RN fabulous! Crystal is a rare nurse, in that being young, she is so very mature. She quite thoroughly and completely thinks over the situation at hand, and determines what is best for Her patient. She has a empathetic heart and has held my hand many times when triple lumen femoral lines were being sewn in, as I always cry during this painful intervention, but with her calming voice and warm hand to hold on to, she makes it all OK. I hope during my time at Duke, that Crystal always works on 7800, as she is a rare gem amongst nurses who cares and advocates for her patients. I have had nurses who are jerks and hate their job, but they do it for the paycheck. They are not in it for the caring and healing aspects of nursing but are instead, burnt out. It's true, in a nursing survey, when asked if they would recommend nursing as a career to their children, current nurses responded that 3 out of 4, or 75% of them, would NOT recommend nursing to their own children. Citing the poor pay, shift work, bad backs and lots of lifting, they said "NO". Revealing, isn't it? Thanks Crystal, for being a wonderful nurse and great person! When Crystal tried to access my Medi-port in my left chest, the saline flush caused acute pain in my neck. In fact, the IV nurse came up to access it and when she did, I was crying in pain. Not a good sign. Crystal then decided that there was not going to be a Medi-port access tonight as something was just not right. She knew not to try to push against painful resistance and to listen to me when I said it hurt. Instead, the MICU resident had to come to my room and put in a triple lumen line in my right femoral vein. This is an IV line in your crotch. Not nice but it has always worked for me when my Medi-ports have failed. So the next day, I go to Interventional Radiology and they inject contrast dye into the Medi-port and see that the dye is collecting in my neck. The catheter is leaking and all fluid pools into my neck, which explains why I was crying like a baby the night before when the saline flush was pushed in. Acute pain. Solution: remove the Medi-port. Not an easy option in me, who has almost no IV access left for Medi-ports. Big dilemma for Dr. Kussin. Lots of discussion about me and my situation in the hallway outside my room. This newest Medi-port was just put in in late January, so it's not even 3 months old! Dr. Kussin speaks to the surgeon who put the Medi-port in in January. His name is Dr. Lawson. He is a nice guy and I like him. He says he is very surprised it even lasted this long as it was in the poorest place possible, a collateral vein off my azygous vein in my chest. He didn't expect it would even last a few weeks, but to hear it lasted almost 3 months surprised even him. Well it upset me. Why would I have to go through a general anesthetic for a Medi-port that was doomed to fail so soon? I don't like being put to sleep and going off to La La Land for nothing. It adds another failed attempt to my medical record and submits me to another surgery. I expect a long lasting Medi-port and that it should not fail for mechanical reasons. Not in me. I am too fragile for this. Anyhow, so off Lori goes to the OR for another Medi-port. I did not take this easily, but even Medi-ports have failure rates when they are made, and it seems lately as though I have been getting the duds. Hmmm...Just coincidence and not of statistical significance, I tell myself. My saga continues... I'm back, having taken a day off to gather my thoughts, and have a nap before I continue on. My sputum grew out B. cepacia and it was sensitive to the oral Septra I've been on for months, so Duke was not that aggressive to go after it. Down the road, this will come back to haunt me as the bugs grow out of control and then it's back to Club Med again. I'll suggest home IV therapy first, desiring to stay at home and go to work on good days, rather than another CF tune up. After 11 days, I was discharged home. Brian drove while I slept in the back of my SUV all the way home. As my Medi-port site was too painful, I refused to have it accessed. I know I would pass out from the pain, dramatics and all, and I said "NO WAY", can't touch this. In 2 weeks, it will be fine, and in 4 weeks, I'll have home care come and flush it. Just then, it was way too tender to plunge 2 needles into the Medi-port. I know my tolerance for pain. This being the case, I was not sent home on any IV antibiotics. The docs reasoned that I'd been treated for 7 days with the good juice so that should hold me. In the past, this has proven to be a poor decision. Not aggressively treating my CF bugs for 14-21 days means they creep back faster and sooner, then I am calling back to the docs to ask for IV med's. This means another admission for a CF flare. Either treat it hard and right, straight from the get go, or I'll bounce back as a failed attempt. Another of life's learning lesson when it comes to CF. I feel well enough to return to work next week. I have missed my job but did not feel well enough to be able to put in an 8 hour day, so I have slacked off and taken more time to recover and heal at home. It has worked and now I'll be back to work soon. My sisters Noreen, Nancy and Dolly all called me last week to check in with me. They all live in Canada and we had a wonderful chat. I cried. I am homesick for Toronto, for my family. Brian and I are scouting out renting a RV camper so we can travel to Ontario to visit my sisters. I was last in Toronto at my fathers funeral, in 2001, so it's time to plan to go home. This time, we'd have to pack lots of green oxygen cylinders in the RV to make the trip possible, then we could drive from city to city visiting my sisters. It might not happen until 2007, as my driver's license is suspended until August 20, 2006 because of the seizure I had in February 2006. In Virginia, your license is suspended for 6 months after your first seizure and the time starts all over again if you have another. Amen I did all my seizing on Feb. 20, 2006. So traveling by RV will go on the back burner as a project we hope to undertake in the Spring of 2007, when I have my license so I can help with the driving. I am excited about this possibility, and to go home to visit my sisters! I miss them all so very much, all FIVE of them! May 7-19, 2006 2 days ago, the sutures from my old Medi-port in my left chest, and also the sutures from my left thigh, were removed as scheduled. Then 6 hours later, my left thigh was swollen and red, very sore and nasty. I waited 24 hours, thinking it was just a local area of irritation that would resolve. Brian wanted me to go to the local ER, but I thought that would be abusing it. So I waited. Another 24 hours after that, I KNEW I had to be seen in the ER. My leg was very infected and I had a 102° fever. A new adventure had begun... Always the drama Queen, this could not be a simple infection. No. It had to involve my Medi-port and I dearly needed the IV access for antibiotics. Off to Norfolk General Hospital we went. Got there at 11AM and was triaged and seen by General Surgery who didn't want anything to do with fixing my leg and instead, deferred to the Vascular Surgeons. They came in and said I HAD to go to the OR emergently to have the infected wound cleaned and the Medi-port removed. I asked lots of questions and extolled them to try and save the Medi-port. NOPE. It had to come out. "CALL DUKE", I asked. The ER physician did that and after a run around with Duke, Duke agreed to take me as a patient. Now....the rain was pouring down and the Nightingale Helicopter was grounded. He local EMS Ambulance was not willing to drive 4 hours in bad weather to get me to Duke, so the plan was to hold me in the ER for 12+ hours until the weather changed and I could be sent to Duke. But then something wonderful happened.... Last year, I signed up for Medjet Assist, a medical flight service that will fly you anywhere for medical treatment, not just for accidents. As long as the receiving hospital is 150 miles away from your home address, they will fly you there. And that they did! Within 2 hours, Medjet Assist had faxed to the Norfolk General ER a flight plan and were en route from Georgia in a Lear jet to get me. Awesome! They arrived at Norfolk Airport, met the waiting ambulance, came to the ER to get me, loaded me in the ambulance and then settled me onto the gurney in the Lear jet. It was a flying Intensive Care Unit. The flight was very smooth and took just 40 minutes to get to Raleigh Durham airport, then to a waiting ambulance, drive to Duke, and then admit me to the MICU. Amen that I had the foresight to buy this membership plan as this flight cost about $6800, ambulances another $800. Total cost $7200. The Medjet Assist family membership for Brian and I, for 3 full years, cost just $695. The impetus to buy this Medjet Assist membership came from my long hospitalization in Orlando Florida in May-June 2002 when Brian made the decision to fly me home to Norfolk General Hospital on a similar jet, only that time, we did not have this flight membership and it cost us $6000 to bring me home. Amen we could do it, but it was a financial bite back then, so when I saw this Medjet Assist membership plan on the web, I researched it, then bought it. Amen for having secured this peace of mind with no financial worries about paying for the Lear jet. Check them out at www.medjetassist.com So I am in the Medical ICU at Duke and I plead with them to try and save my Medi-port. We give it the old college try and aggressively jump into a triple IV cocktail via a new femoral triple lumen IV. 4 days later, it is very obvious that I will not be able to save this Medi-port and so I am sent to the OR to have it removed. I return with a 2 inch hole in my left thigh that is stuffed with gauze packing. Painfully, it has to be changed and re-stuffed every day, something I am NOT going to do on myself. My home care company asks if Brian will step up to the plate and volunteer to change the packing each day. "No way", he replies. "I'd vomit into the wound trying", he says. So I haggle with my home care company saying I have full coverage for it to be done by a nurse so send one out and don't make me do it. It works. A nurse will be sent to my home to change the packing every day, until it heals, which could take about 6 weeks. It has to heal from the inside out, and it's very deep. Been there, done this last summer. Repeat of the same thing again. The day after my OR, I notice my left leg is swollen, like an elephant's leg. It seems to weight 20+ pounds and is so tight, I can't bend my knee. I am startled, and think it's because I have been on bed rest for a week. I was to be discharged today, but when I ask the pulmonary Fellow to examine it, he knows right away what I suspect...a DVT. This is a Deep Vein Thrombosis. I KNEW I had a clot in my leg, and an ultrasound confirmed this 100%. No going home today, Mother's Day, and graduation day at Duke. The pulmonary Fellow discusses my options and I like the surgical option the least. They suggest a filter in my inferior vena cava to "catch" other clots that break off and travel north. The pulmonary attending for the weekend wants me to go on a Heparin IV to anti coagulate my blood, making it thinner. The pulmonary Fellow tries so heard to place another triple lumen femoral line but after 40 minutes, no luck. I am whimpering under the surgical drapes, Brian is trying to distract me, and without this IV line, we are running out of options. As I can't lay flat in the bed to help the IV line thread into my vein, it hinders getting blood return. Lying flat means I struggle to breathe and it's something I don't do. I always sleep on an angle, at least 40° so I don't gasp for breath. We take a break and regroup. No IV line. I begin Lovenox injections in my belly twice a day. It's now Monday and Dr. Kussin is back rounding. He is not happy to see me, thinking I was going to be discharged 3 days earlier. I tell him I am not happy to be here either. He presents my options to me and I decide NOT to go for the surgical approach. They then agree to put me on Lovenox injections for 3 months. I am taught by my nurse how to do this twice a day in my belly. I have lots of fat so it's not that bad. A few days later, I am discharged home. Brian leaves Virginia at 5AM and drives 4 hours to Duke, picks me up and turns around to drive another 4 hours home. What a blessing Brian is to me. He is always there when I need him and is involved in my care. Brian is the man your parents prayed the Lord would send when they wished for their daughter to be married. I am that fortunate and blessed. So now I am home, it's May 19th, and I am healing quickly from my DVT (blood clot). No problems with those twice a day shots and a nurse comes every day to change and pack my leg wound. I survived this time. My friend Jennifer says "I am a tough old bird". She has held my hand as I cried out in pain last week and prayed at my bedside for relief from pain. She also supplied me with a stash of peanut butter cups, which is the best medicine you can get. Thanks Jennifer Caldwell. Let me also mention that the Pulmonary Fellow, Dr. Jermaine Jackson, is the nicest doctor you could have involved in your care. I wish he would relocate here to Virginia so I could have him as my CF doctor. This is a guy who is determined and is going somewhere in medicine. He clearly explained all my options, knew what would cause pain, and did his best for me. Plus, he's not that bad looking either, hubba hubba. All this time, I also had company on the CF floor. My friend Lori Jernigan was also admitted for CF concerns and we were buddies. I was on bed rest and could not leave my room, but she and her husband Jason came by all the time to visit me. They even ordered a pizza for me one night. Thanks Lori for making some of the pain bearable and for sharing your experiences with me. What would Dr. Randy Garnett say if he knew about this charade? My take home message from this: The Lord was there and in control all the time. Many people at my church prayed for me and called me to encourage me. Many times, I was emotionally frail, asking the Lord why He would send blood clots my way just to slow me down, but His answer was that it was better for the blood clots to have been discovered before we drove the long drive home, than to have one break off in route home and possibly die while Brian was driving me home. So to everything, there is a time for the Lord's purpose. This time, I survived. Thank you Jesus for this. Thank you for arranging the MedJet Assist, for the excellent nursing care at Duke, for concerned doctors, and for a loving husband. Another day dawns fresh tomorrow and another set of experiences comes with it. May I always glorify God in each day, and look to Him for my portion of blessings. May 26, 2006 It's the Memorial weekend here in the US and we have nothing planned other than house issues. Things to do like pick up tons of fallen tree branches, changing the furnace filters and general upkeep. I have been feeling great and my left leg is nearly back to normal. The clot is still in my upper femoral vein, but it is smaller and so my leg is not as swollen. I have to give myself Lovenox injections twice a day in my belly for this. When I am in Heaven, all this will stop. No CF, no meds, no treatments, no coughing. I look forward to that down the road, but not just now. I am enjoying life too much to not to want to be alive. I will return to work next week on modified duties, and it's about time. I've been off for 4 weeks now, and this sickness stuff has to stop. Enough being sick with CF and Medi-ports, I want to work. That's the desire of my heart. We are having curving ramps put in at our house so accessing the inside will be easier for me. When I use a scooter, I have to use the garage to enter the house, but the completion of these ramps will mean a scooter, wheelchair, and my oxygen tanks too, can easily enter the front door and the foyer. It was necessary to adapt our house this way both for my future needs, and in case down the road we have to sell, then the house will be wheelchair accessible. Everything with Brian is wonderful. He doesn't complain and loves his radio station here at home. He gets in from work, gobbles down some salmon, and goes right to his studio here to work on his radio programming, or out to his electrical bench to work on circuits. He is a genius and I love him, truly and madly. Well, I'll close here having told you I am well and thank the Lord for His provisions in my life to meet my every need. Isn't He wonderful? Isn't Jesus our Lord wonderful? July 8, 2006 Nope. I'm not dead (yet)...So glad to be back on line in real time after my long absence. A number of factors converged to keep me quiet for a bit: 1) I had to reformat my hard drive and I had not made a back up of this web page in the year 2006, so trying to rebuild it from December 2005 was way too tough. 2) I did not have a Macromedia program that would have helped so I tried to put things together as I went and I messed up all the time. I had to run a 30 day trial of the software, get to know it, then buy it in order for me to jump right back in using the FTP utility to get right back on the on ramp. 3) Life has been so wonderful and precious that I was actually too busy at times to write and lastly as an excuse, now y'all can hear it from me that I am not dead...yet. Some friends at work asked if I were dead, as they had not read any thing new on my web page and that's how they keep tabs on me. It's not usual for me to go this long without updating everyone. All will be happy to know I am still in the land of the living, and loving it! Let's see....I saw Dr. Kussin at the Duke CF clinic in June and he was pleased with my progress. He is trying me on a rotating antibiotic cocktail to help soothe my gram negative nasties and I do believe I am no worse off for trying it. I have the expected side effect of yeast everywhere, but at least I can breathe! It's one month of Septra DS pills, then the next month of Zyvox pills, then add some Doxycycline and alternate with inhaled Tobi and Colistin. Voila! I have not crashed since my last tune up ended on Mother's Day. My sputum is nasty, but not yet in that "make me vomit" stage. I am holding out for my sister and cousins to come visit from Canada before I have to consider a tune up. Shannon and I did a Duke road trip for clinic appointments. She had transplant and I had CF clinic. We went down the night before and stayed at a local hotel as our clinics were early and it's a 4 hour drive from home. I had a great clinic visit but Shannon was admitted, so her husband had to drive down to come be with her. She did well and was home in a week. Another blessing and prayer answered. Last week, she and her boys came over for a pool party. It was nice to lay out by the pool and do nothing. Sweet Dr. Randy Garnett sent me to the Vascular Lab to see which (if any) veins I have open for another IV line, down the road. Well, there is a very deep brachial vein in my left arm which could be used for 2-3 days if it were emergent. They would have to use ultrasound to stab at it. It is enough to get me started on something if I am getting sicker, but it is blocked where it mainlines into the subclavian vein, so it won't support a PICC line or a Medi-Port. It's a short term solution to a more desperate problem of only having a patent right femoral vein open. Yup....my left femoral still has a clot in the vein but the distal popliteal vein is preserved, Amen! Still, if I need a line, it's back into my crotch to find it. Never a nice situation and I work myself into a low panic when it comes to that. It is very painful. At Duke, you can only have some sedation if you are in the ICU. Nothing if you are on the floor. So they demand you lay still while they try to get a humdinger of a needle into your crotch, all the while you mustn't flinch or kick the doc in the nuts when he hits your femoral nerve and you scream...then cry. Sometimes the treatment is worse than the disease. We have been very busy with the contractors doing the renovation work at the front of our house. It's nearly done, having taken 7+ weeks thus far to custom build 2 sweeping curved ramps for wheelchair access as well as lighting upgrades and next week, 4 palm trees will be planted. OK friends.....time to end here. I am well and loving every moment I breathe. Thank you Jesus for that pleasure. Chat again soon, Love Lori. XOooXxx
This is a photo of my Duke CF doctor, Peter Kussin. He is the director of the Duke Adult Cystic Fibrosis clinic and he and I are getting to know each other, especially my quirks about how I like my medical treatment done. This photo was taken (by a professional) during a press briefing while he was volunteering his medical services to the folks impacted by hurricane Katrina. It was published by the Associated Press and run throughout the South, which is how I got it. Cool!
July 10, 2006 It's Monday and the beginning of a new work week. I should be at work today. Oops. I'm paying hokey instead. I had to bump up my dose of Lasix today and that diuretic medicine makes you pee out water excess, so it's doing its job of making me skip to the bathroom every 20 minutes as my kidneys are being wrung out to dry. So no going away from a toilet for about 4 hours. I knew when I woke up at 6AM I had to jump start the Lasix as I was moderately swollen and puffy. This usually means I am going to head into respiratory failure if I don't act on it, and since I dislike being in the hospital, I did as I should and took the medicine. Good Lori. Plus, I am feeling OK for me. My trach is spitting out nasty stuff but I am no more short of breath so it's not something I am concerned over (yet...). My sister Noreen arrives in one week for a stay here with Brian and I, then my cousins from Toronto come for a week. O joy! If I feel well, we will go to the oceanfront for a stroll and if I really feel good, we'll attempt to go to Busch Gardens for the day. We try to go once a year. We used to have a seasons pass, but never used it, then when I went on oxygen full time, we just stopped going. Now, they have scooters there and when I take extra O2 tanks, we can go for a nice day trip. I don't go for the rides, preferring instead to see the world attractions and eat from the Fest Haus in Germany. The contractors are here working on the access ramps to the front of my house now and it's a very hot day here. Too hot for me to lounge out by the pool...plus I'd have to run in and pee anyhow, right? So I am in my office on my computer instead, where it is 68° and cool. OK...that's my update. Love to my family in Canada.....Your little sister Lori XoOxx July 14, 2006 Today is an interesting day for me. Yesterday, I was out shopping in the afternoon when I noticed my left calf and ankle gradually was swelling up. Yesterday morning, everything was fine, but by afternoon, it felt like a swimming pool was sloshing around in my lower leg. I came home about 5PM and then when Brian arrived home, I showed him. He was concerned. I was quite tired, so I laid down and elevated my leg. I also took a dose of Lasix so I could pee out the water excess. It was helpful in that I did diurese about 1 liter. I slept all night with my leg elevated and I said that if it wasn't better by the morning, I'd have it looked at. Today, my internist examined it and he was stumped. Clearly, he is concerned I may have another DVT (deep vain thromboses), a clot in my lower leg, but he is stumped by the huge red rash all over my left leg. Not on my right leg, just the left leg. Today, it does not appear as swollen as yesterday, but there is still fluid inside the tissue and my leg is very edematous. So...what to do? My internist arranged for a stat ultrasound today at 5PM at Norfolk General Hospital and a consult with a dermatologist today at 1:30. The dermatologist's office called at 1:15P to cancel my appointment, saying the doctor does not see new patients on a Friday. (yeah...more likely it's his golf game that is more important!). So they re-scheduled me for next Wednesday. In the mean time, today at 5PM I'll have the ultrasound and find out if I have a clot in my leg. If so, my internist said he'd want me admitted for management as I am already on Lovenox injections and then this happened. The best part of this (could there be a best part?) is that should I have to be admitted today, my favorite doctor, Randy Garnett is on call. How did that happen? Him being on call the very day I'd need him for a possible DVT? I could have gotten one of his other partners in the group, but as I like Randy the best, this would be a good outcome for me. Now on Monday, my sister Noreen flies in for a visit, so that might be screwed up. Drats! I'd have to have someone go pick her up at the airport and bring her here to my home. She'd do well on her own, but I brought her here to spend time with me. I don't want to be in the hospital now. This upcoming week is important to me, to not be sick, to be Lori at home and to feel well. Please pray that I will not have a clot in my leg and that it is something else the doctors can fix. I am trying to see God's blessing in all this but right now, my view is cloudy. Brian is right behind me, praying that it won't be another clot. We ask for His will to be done. Thanks for listening, Love Lori. NO NEW CLOTS! Brian and I went to the Vascular Lab at Norfolk General Hospital and I had an ultrasound which was NEGATIVE for clots in my left leg. AMEN! The scan did show that my original clot in my left femoral vein, is still there and is very evident on ultrasound, but more importantly, there is nothing new to report. Hmmm....so why all this leg swelling? At least we are certain it is not another clot, so we have ruled that one out. Thank you Jesus for this answer to prayer. They said if my leg gets worse, to call my internist again and let him know. To go home, keep it elevated, and follow up with the dermatologist on Wednesday to try and explain the peculiar red rash all over my leg. This is hopeful news. I did not want to be admitted and then be heparinized for another clot as it brings back fearful memories of episodes of hemoptysis when my oral Coumadin dose is increased. So far, on the Lovenox shots twice a day, no hemoptysis. OK...so now I just continue to do as I do everyday and elevate the leg. Brian keeps a watchful eye on it, believe you me, and he'll detect any changes that need another medical opinion. So go home, go to the airport Monday to get my sister, and have a great time with her and also with my cousins who arrive later that week. This is a wonderful answer to prayers and it's the best outcome we could have achieved. Thank you Brian for being there at my ultrasound appointment to provide emotional support to me and for buying me a baked potato for dinner on the way home. The saga continues as my life is ever so interesting. Love from Lori xOoXX July 19, 2006 It's been 3 years today since my friend Stephen Neller died. Scroll back into my journal to July 2003 to read about this sad time in my life when my good buddy died suddenly from complications after his double lung transplant for CF. His death threw me into a depressed state for about 2 months (my first depression ever) and now I see God's blessing in it and see it as a wonderful new beginning for Stephen to be welcomed home to Heaven. I went to his grave and cleaned it up after tree branches had fallen all over it and told him I knew he must be so very happy now, and that in time, I'll see him again. I also got a phone call from my internist's office telling me did I know I have a clot in my leg? WHAT? When I had the ultrasound scan on Friday evening, the tech said she called the on call doc and they discussed the negative findings and told me to go home, that I did not need to be admitted to the hospital. I was glad to be able to go home, but knew SOMETHING was up with my very swollen left lower leg. Home I went. Then today the call says the official report showed an acute, non-0cclusive clot in my left leg. I asked them to discuss this with my internist as he was calling the shots, and they said he was out of town for the week, but that they emailed him and he checks his email every 3 days, so when he reads the email, he will render a verdict. What a crock!! To be told to go home as I had NO BLOOD CLOT then to be called 5 days later and be told the radiologist read the scan as being acutely positive for a clot! Oy vey. What doesn't kill you must make you stronger, eh? I asked them to fax a copy of the report to Dr. Randy Garnett. My left leg is still swollen, edematous and red. Today I also kept my appointment to see the Dermatologist to find out what this nasty red rash is on my left lower leg, which suddenly came up the very same time as my leg became swollen. One look at it and the doctor knew instantly what it was: Hemosiderin purpura. She immediately asked if I had a clot in my leg, without me telling her so. She was good! She said when a clot engorges a vessel (vein) the red blood cells sink into the vein and stain it red. When blood flow is decreased to the leg, then the red blood cells settle and give a red rash that follows the vascular veins, which is why it looks like a road map. She said it will take 6 months to re-absorb back in to my leg and it will slowly go away. The treatment is nothing medical. Just keep messaging the leg and try to keep the blood flowing. I told her I was on Lovenox injections which is supposed to keep me from clotting (didn't work this time, eh?). OK Lord.....You and me need to work on this issue. So far, this clot hasn't killed me outright, but it's still threatening. Please dissolve it so it is no longer a treat to my life. And send me a good lawyer who will sue the idiots who said I had NO CLOTS. Amen. Love Lori 0xXX0 A day later... Today I heard round about from my local pulmonary doctor that in his opinion, I ought to go to the ER and be admitted for this new blood clot. He told my internist's nurse that it appears my Lovenox dose is sub therapeutic which is leaving me open to further blood clots, so to go to the ER and be admitted for heparinization. Nope. I am waiting to hear back from Duke to see what they advise me to do. As they were the first ones to diagnose and treat me for a blood clot in May, then their opinion is also important for me to make an informed decision. My internist thought perhaps I ought to go down to Duke for treatment. If I have to be admitted, it can be done here, locally. Should I trust them here? They sent me home 6 days ago saying I had no clot. Hmmmmm.... I asked Duke if I could increase my Lovenox dose in the shots I take twice a day to boost up my anticoagulation and am waiting to hear from them. Tomorrow, I'll go to my internists office to have a finger prick done to determine my blood clotting level. This is information we need to decide what step to take next. I was not going to drop everything to be admitted this time just because now I knew something I did not know a few days earlier...that I DO have a blood clot. Those 6 days of being told I was negative did not make me rest more, or baby myself or whine louder. I grasped life fully and did everything I wanted to---despite having a blood clot. So knowing I have one now, does not suddenly make me want to be admitted for being "fragile". Silly, eh? I know my body. I know when I need to be admitted and so far, I have been on the better side of this clot. I know all too well, the suddenness of people walking around who have a DVT then a PE, and they drop dead. Then they see me in the morgue. I do not feel threatened enough to want to be admitted since it has not felled me for the worse these past 6 days. Stupid reasoning, I think some would say, but it works for me. My sister erred on the side of wishing I'd go to the ER and be admitted. It would be her comfort zone for me to be there, but it's not the treatment choice for me right now. Now, last Friday, had they told me then I had this blood clot, or DVT, I WOULD have jumped at being admitted because my leg was so grossly edematous and painful. It made me go to my internist as it was that concerning for me. So family and friends, sometimes medicine can heal and also harm. Don't take these healers at face value, but learn to question everything. You are the keeper of your own body, and you have to ask and inquire. Be curious. Ask questions. Don't be intimidated by people in white lab coats. Speak up. Speak loudly. As importantly, establish a trusting relationship with your family doctor or internist, so you can talk about everything and not walk away with unanswered questions. That's my advice, and it only cost 5 cents. Hugs from Lori....still breathing... July 24, 2006 My left leg is 100% better add it is almost back to normal, for me. Amen for answered prayers. Duke called me today to see how I am doing and I am still waiting for the pharmacy to stock to 80 mg syringes of Lovenox. But until then (few more days?) I use a 60 mg syringe and then grab another 20 mgs from another syringe to make the dose equal 80mg. It's too early to tell so far, but no hemoptysis (coughing up blood from your lungs). Duke assured me that should I desire to be admitted there, I should drive down and they will be ready for me. The appropriate doctors have been brought up to speed about me and would be willing to admit me if necessary, as Dr. Kussin is going to be out of town for this week and someone else would have to do the paperwork. But....that is not in my plan as I am feeling well. I certainly am burning the midnight oil with my sister and cousins here, but you do that for family. It's once a year so I am trying to show them a good time. My cousin and his wife come and go as they please, so that's easy. We had dinner tonight at Golden Corral, an American style buffet. A few days ago, we tried Italian for dinner. Then the day before that, we grilled out and had salmon, rib eye steaks, and chicken ka-bobs. Everything was excessive and wonderful. Everyone swims as much as possible and my sister is like a fish....she swims all day then relaxes in the hot tub. It is so wonderful for her back that she can do this. Speaking of wonderful, when we arrived home from dinner, a voice message greeted me.... from my nephew Daniel Brown in Newfoundland, Canada. It's been about 5+ years since I've heard from him so Danny, when you read this update, please call me more often! I pray for you and Danielle (his wife) and want to hear from you and have you both come visit. Plan for it, OK? Before I die would be best.... Love your Auntie Lori xOoXXo August 1, 2006 Wow is it ever HOT here in the South! It's been 100°+ a bit every day and it leaves everyone exhausted. For me, with my salt depletion and Cystic Fibrosis, I have been gobbling down pretzels all day. Bad news is that I retain some extra fluid from the salt gain and take medicine to pee this off, but I sure do need heaping servings of salt when it goes into the high ninety degree range, which is almost every day here during our blistering hot summers.
We've got an in ground pool, but with my trach, I don't just jump in all day. I prefer it inside under air conditioning. At least I am not in Canada with blistering cold winters, so it's a trade off and I'll stay put right here. My sister and cousins have left and the house is quiet. Too quiet. I loved it when they were here. Now it's just the occasional meow from a kitty or a shriek if they see a lizard outside. Some days we did nothing and then we even went to Busch Gardens. Noreen was on her scooter and I rented one, and we drove all over and had a good time. It was overcast and was forecast to rain, but it didn't and we had a fun time. She is learning how to drive her scooter but watch out! My days are lazy now, now that my family has gone and it's too hot to do anything. Ahhh the life of retirement. When I have DMV reinstate my drivers licence, then I'll approach my boss about going back on the on-call schedule to investigate death cases. That should be in September, after a tune up. I've changed my rotating antibiotic regimen today as it's the first of the month and that might make my sputum better. Each month, we rotate meds and hit the lung bugs hard, hoping I can stay well longer before being re-admitted again. My fear is the next admission when they have to find a vein in my crotch and the pain that inflicts on me. I dread it so much that I don't want to go back, but to live a bit longer, I have to go along with the treatment plan. Some day, the Lord will reveal the mysteries of why He chose me to have cystic fibrosis, but then when I see the blessings having CF has brought into my life, including my husband Brian, there is not that much explaining still to do. My left lower leg is back to normal and we are in praise for that! It is not red, swollen or blotchy now and it does not feel tight or compressed, as it did 2 weeks ago. Amen for answered prayer again. I know that another clot could be deadly if it were to break away and form an embolism, either in my brain or in my lungs, so the seriousness of having a deep vein thrombosis has not escaped me. People die from these clots. Well family, time to go after this short update. I wanted to let you know what I was up to and that I am feeling so so and could be better. We'll cross the tune up bridge down the road but for now, I am blessed. Always blessed. Love your sister Lori xOoxXo August 13, 2006 Tune up time soon for me. Time to make the calls needed to get the ball rolling so I can get treatment for my nasty lung bugs. I mentioned the worse part is acknowledging I have to go in for them (the docs) to put in a femoral line and the pain and torture that comes with putting that IV line in my groin is so frustrating. I have been praying that the Lord will calm my heart as I try to be very strong and brave when they do it, but it hurts so badly that I always cry anyhow. Knowing the pain is coming creates fear. When they hit the nerve (right next to the vein) I JUMP OFF THE BED, literally! It's like I've been electrocuted from the tip of my toe to my groin. The ONLY thing that makes it all better is if I am sedated. Then it's easier on ME and it does not frustrate the resident trying to do it. I am really sad now, knowing it will come to having a femoral line and knowing that they only sedate if you beg them, plus you must also be in the ICU. No sedation on the floor, but only in the ICU. So they say to grin and bear it, then cry. What a horrible way to tell the patient to suck it all in and be brave. I'm waiting to hear back from Duke about switching to oral Coumadin and stopping the twice daily injections of Lovenox. My out of pocket payment is $400 for a month worth of Lovenox syringes, but only $10 for a month of Coumadin pills. This $400 is new as of July 1st as we changed insurance companies and now that's the price to pay. Sucks big time. Time to let the CF docs take control and order potent IV drugs for me so I can feel better for the cruise in October. I have done nothing last week other than stay at home and veg. I had Shannon come over and we talked but no work or leaving the house. Partly as it was still too hot to be outside but also I was not feeling well enough to be coughing out a lung in public. No one wants to be near you when you are spewing out a lung and gasping. People think you are diseased and have smokers cough. My oxygen sats are still in the OK range for me, so I am happy. Not panicked. As long as I can keep them above 92%, Dr. Randy Garnett is happy for me. I'll have to call him and ask for his advice tomorrow seeing as I am heading for an admission either locally or at Duke. Hmm..... Brian is congested and has tons of mosquito bites from spending so much time in the dense forest and brush we have here, working on his radio tower and antenna. Eaten to bits, he is. He is using his puffer frequently lately, so I have to watch over him too. I don't like it when even HE has a hard time breathing due to his asthma. I spoke with my sisters Noreen and Dolly this past week. It is always good to hear from them. My cousin James from Toronto called today and he is already planning his return trip here next summer. It will be the 400th Anniversary of the founding of Jamestown, Virginia, so there will be lots to celebrate. OK family and friends, when I know I'll be admitted for a tune up, I'll try to update this page before I go in if I can. Love Lori OxoX August 19, 2006 Duke called. They have a bed ready for me. I'm going to be admitted tomorrow, Sunday. The CF nurse, Edana, is such a pleasant lady to work with. I called her, told it it was time for a tune up, she talked with Dr. Kussin and arranged it. Nobody asked me a million questions about how did I know I needed to go into the hospital and why. Hey, I've lived this long with CF so I know when my body needs help. The oral antibiotics are no longer working and it's time for the bigger stuff. I want to return to work, to the job I love, but I have to get myself tuned up first, before I go back to my Forensic Files slash Quincy slash CSI slash Dr. G, dream job. I could have arranged to stay here in Norfolk, but they are so clueless about CF (except Dr. Randy Garnett) that it frustrates me to be under their care. Duke knows CF. Duke has experience with atypical CF cases, like mine. Duke knows there are 1300+ mutations of the CF genome and not everyone with CF are textbook cases. 15% of people with CF go against the books and are NOT pancreatic insufficient, meaning for some DNA reason, they actually make their own enzymes and don't need to take enzyme replacements, which means they are not skinny with a bony skeleton. I am fat. I have CF. The 2 do co-exist. OK...enough ranting...... Please pray that the placement of the IV line for med's, in my femoral groin vein, will not scare the living daylights out of me as I lay there on the bed and whimper in tears. It IS painful and hurts, yet I am expected to not move or flinch. That sucks. It hurts! Please pray that the Lord will calm my heart and that the resident will get the line on the first try without me begging them to stop. Please pray for me. I am scared to go in knowing this procedure waits for me. There has to be another way not to torture me. Please Lord, show me another way to get this done without being tortured. Brian will come on weekends to visit and cheer me up. I always look forward to his visit. Please pray for him too, waiting at home, 200 miles away, trusting the doctors at Duke to work their magic from their bag of tricks and make me better. In the end, the Lord is the great Physician, and He calls the shots. Pray. Love from Lori XooXXOOxo
In closing, my big boy Simon turns 18 on Tuesday. I've had Simon since he was 6 weeks old. He was born in Toronto, on Livingstone Avenue, in the basement of a friends house who had died. When her family went to clean the house, they found baby kitten Simon and his 2 siblings in the laundry room. I adopted him, while his sister went to a loving home in San Diego where she still lives today. Happy Birthday, Simon! Simon having a bath for his 18th Birthday
September 10, 2006 I'm home from Duke. I have been home for a week now, but have been too lazy to write. Mostly, I have been sleeping and healing this sore body I own. I had a good tune up at Duke and was treated well. On the day I was admitted, the intern didn't want to poke me for a femoral line as he was too green (new) to it and I told him I am a very hard "stick". I asked if the Resident who had done it twice before on me was available, Dr. Jermaine Jackson. Nope...he had moved on now and was a Pulmonary Fellow, not a Resident who puts in femoral lines. Well imagine my surprise when the next day, my Knight in a Rusty Lab coat shows up to put in my femoral line--Dr. Jermaine Jackson! Oh how I thanked the Lord for sending him. It was equivalent to a dose of Ativan (anti-anxiety med) to have him come and attempt to put in my femoral line. Thank you Jesus. He got it in on try #2. Done. Of course I cried when it hurt and I felt battered, but his gentle calm voice and hands of this Knight in a Rusty Lab coat, helped with my anxiety and gave him confidence too. Now I had an IV line for med's. Bring on the good stuff. 16 days of this and I was ready for home. What helped keep me sane were daily phone calls from my friend, Laird. He is a Duke double lung transplant for CF and is something like 52 years old. He is living life fuller now, with new lungs, than in the last 10 years with his ravaged diseased CF lungs. Laird does everything. He hikes, rides motorcycles, skis, drives fast cars, everything. He is the poster boy for the miracle of lung transplant. Laird has not sat back and wasted a day doing nothing productive. He is a real "Mountain Man" and is another example of life after life, when on organ donor recycles organs to another person. Every day we talked on the phone and he encouraged me and at times, made me laugh. In fact, I heard his local hospital has its Respiratory Therapy department all praying for me and rooting for me! They log on to this web site and check out me to see how I am doing. They follow my ongoing adventures and in addition to laughing at me at times, they PRAY for me too. Amen to those at Saint Alphonsus in Boise, Idaho who care about me. Thank you, Friends! So what is this Happy Face thing, eh? It's the hospital pain score card. Duke, and most all hospitals, will ask you ...."What is your pain score now?" and you give them a number. They use these smiley faces to see how you are perceiving your pain. Mostly I was at a 4 when I had the femoral line in my groin, and when I pulled too hard and yanked on the stitches, I jumped to a 8, but that was not often. Here are the cards from St. Alphonsus.
While at Duke, my hemoglobin dropped to 7.8 (should be 12 to 15) but I was feeling fine. I told Dr. Kussin and the remedy to this low hemoglobin was to stop the multiple blood draws for the lab and not take any more blood than was necessary. He agreed and limited my blood tests to only necessary labs. Still, I dropped to 6.9. Hmmm....maybe you are bleeding from your gut or rectum? Tests showed I was not. I urged them to use pediatric tubes (a Dr. Randy Garnett trick) when taking blood and to not waste as much as they were. The end of it is that my hemoglobin dropped to 6.7 and I was symptomatic, with paleness, shortness of breath, and extra heart beats. Their solution was oral iron pills and a blood transfusion. Nope to the blood transfusion(s) as that is what got me kicked out of the lung transplant program in the beginning....12 blood transfusions with multiple antibodies meant I was not a candidate for new lungs. Been there, done that, lost the chance at lungs. No way. I promised to each more brussel sprouts, green veggies and raw steak to boost my sadly anemic body to health again and then was discharged home. I am doing better too. After a week in bed being lazy (I was too weak), and now noshing on high iron foods, I am feeling much better and am well again. While at Duke, a few friends dropped by to see me: Michelle from Oregon is a Duke Double Double Lung transplant for CF, Shannon came by too, Jennifer Caldwell who is expecting a bundle of joy soon, and a lady friend from my home church, Gladys, came all the way to Duke to see me. I was in the ICU step down unit on contact isolation and could not leave my room, so people had to come to me. Thank you for visiting and calling as I get very bored and lonely being alone and cooped up in that room for a while. I brought DVD's to watch and books to read, and also brought my own pillow and duvet, as I knew I was there for the long haul. Brian came down on weekends and then brought me home on the long weekend, home to a clean house. Nothing to do except crawl into bed and rest and heal, which I have done. Lord willing, our cruise is coming up in a month and I am looking forward to it. I'll be more excited as it gets closer. OK family, friends and lurkers, thanks for checking on one me and seeing that I am still in the land of the living. I appreciate your prayers, calls, cards and support. With Love, Lori OXoxxO
September 11, 2006 We will never forget. Five years ago today, Brian and I were having breakfast at the Grand Floridian Resort in Walt Disney World when America was attacked. I was quizzical because the table next to ours had newlyweds who were both crying. I thought out loud that on their honeymoon, what could be so tragic to have them crying openly, in public? A wedding is a time of joy and celebration, yet the Bride was sobbing in tears. I asked our Cast Member (server) what was happening as the restaurant had grown somber and she said that the newlyweds were from New York and that a plane had crashed into the Twin Towers. Disney World went into Lock Down mode. Our friends with us, Donna and Jim, were like thousand of others who were escorted out of the theme parks and sent back to their hotels to wait it out. The monorails were packed full as guests were shuffled out of all the Disney theme parks, fearing that Disney would also be a target. Brian and I went back to our room and he turned on the TV. He watched Fox news (for truth in reporting--unlike CNN) and I went to the pool. Soon the resort was flooded with people who had nothing to do. We came to realize something horrible had happened to America that day. The nice part (could there really be a nice part?) was that we enjoyed an extra long stay at the Grand Floridian as all flights out were grounded. Eventually, 4 days later, we made it home, safely. Donna and Jim were thankful to be home again, hugging their boys who were scared mom and dad were not with them. We never understood the magnitude of it at the time, but now, five years later, the pieces have formed a puzzle rife with clues. "Revenge is mine", sayeth the Lord. They will get back an equal portion of what they justly deserve, not the 79 virgins they are promised. What a crock of bull. Kill an American and you are rewarded with 79 virgins. Only God has the last say, not mohammad (not even dignified by a capital 'm'), not ever. Our God Reigns. Amen! September 14, 2006 I spoke with the Duke CF clinic today as I got my blood clotting result back and it was too low. My INR, which is a measure of your clotting ability, should be between 1.5 and 2.0 and my result was 0.9 today. Drats. So Duke called and said to increase my oral Coumadin dose from 2 mg to 4 mg and hope I don't have a lung bleed. This is dicey stuff as you have to be careful with me. In the past, I have had hemoptysis when increasing the Coumadin dose, which lead to a BAE--Bronchial Artery Embolization--not a nice thing to have done but it was necessary. So the fine line is to keep my blood thin enough so it does not clot, yet not so thin so that I have a lung bleed. OK Lord...I'm asking for higher intervention again to watch over me and not let hemoptysis mess things up. Prayers welcomed and encouraged. As I am feeling much better, I want to stay well. When I have a good day, I get greedy and want another good day, then more. Silly eh? To want to feel well even when I have one foot in the grave and the other on a banana peel. I have to lose weight. I am a blimpo! Darned steroids let you breathe but when on them, I am piglet. Oink. I think I'll go back on the treadmill and work it off--the hard way. OK...all is blessed here and Brian is the sweetest husband in the world. Thanks God, for creating him just for me! Love Lori. September 29, 2006 I have been feeling well and have been hanging in, Amen! I have been doing some small work projects around the house and mostly, making sure things and contractors are doing their job correctly. The weather here has been lovely. Warm sunny days, up to 81 degrees, and cool nights, make this a fine time to be in Southern Virginia. Leaves are not yet turning colors. We will close up our swimming pool in a few days. We installed a new bird feeder right outside our bedroom window and it is always joyful to see the birds flocking to the food. Even there, we see a pecking order. One bird nips at the others to make them fall of the perch, then he moves in for the seeds, all to himself. We asked about getting the feeder that electrocutes squirrels but PETA (they suck anyhow) won't sell them. The squirrels take over the feeder and keep the birds from getting the seeds and grains. We did buy a squirrel proof feeder last week and now we watch the frustrated squirrels retreat in madness as the feeding doors closed under their weight, so they were cut off from the food supply. Brian might rig up an electric current to the feeder, just to shock the squirrels into submission. We take delight in the red crested Cardinals and the Blue jays, which are frequent visitors. My clotting levels are now therapeutic and I have not had any hemoptysis on this increased dose of Coumadin. Thank you Lord for no lung bleeding. On Thursday, I'll be at the Duke Adult Cystic Fibrosis clinic for my check up. Nothing unexpected, just my routine 3 month visit. I have no major concerns to discuss as my recent tune up at Duke did the job and I am still feeling well from it. My sputum is manageable and I am sleeping at least 8 hours. Dr. Kussin scolded me for being on the vent for times less than 8-10 hours a night. One night while an inpatient at Duke, I was up watching the late shows and didn't go onto the vent until 1 AM. Then I came off it at 7AM. When he rounded on me in the morning, he was not happy I'd only had the benefit of 6 hours of vent support. This was the first I'd heard about having to be diligently compliant with 8-10 hours of vent assistance, if only to rest up my intercostal and accessory muscles of breathing. Point taken. When able, I should use the vent to my benefit and get 8-10 hours per night on it. I do believe that I have lived longer as a result of instituting "nocturnal home ventilation" (using the vent in my home during night t time sleep) and I've had a better quality of life in doing so. See, sometimes things work for the best, even when you are skeptical of it in the first place. We are off on a cruise in 3 weeks to the Caribbean. My cabin mates next door are sister #1, Noreen, and her husband Gordon. What an adventure for Brian this will be. This will be my 4th cruise and I enjoy cruise ships. Brian will be tuxed out in his finest black duds, and recently custom tailored new suits...ouchie momma! 3 formal dinners with the Captain, oy vay! Bring it on. OK....bedtime for Lori. Love to my family. I miss y'all!! October 5, 2006 Today Brian and drove to Duke for my appointment with Dr. Peter Kussin. He is the director of the Adult Cystic Fibrosis clinic at Duke and today it was again a pleasure to meet with him. He was upbeat and had a smile on his face. We exchanged jokes and then got to the business of my CF. I've done a good job of taking care of my lungs since my last tune up, and he said I looked well. I did have facial swelling, which is something more bothersome than anything, but it means I need to increase my Lasix dose and pee off more volume. Surprisingly, I had a temperature of 101.1 degrees. And that was after a 4 hour air conditioned ride to get there. Hmmm....my sputum is clear, has no nasty odor, and I am not short of breath. What ever.... We talked about having my feeding tube removed from my belly. He said "yes", it could be done, but when I end up in the ICU next time, the alternative of having them drop an NG tube down my nose into my stomach is NOT something I enjoy. I gag, get cyanotic, and vomit. I could easily just remove it myself and let the stoma heal up. 2 of my friends had chronic leaking from their old stoma, and had to have it stitched closed. He said it should close within 3 days on its own. Did I really want to do this? I am thinking "not". Although it is royally bothersome, when needed, it has been a miracle to have it there, 3 inches to the left of my belly button, just waiting to be called into action. It's not painful but it's another medical intervention I have to carry around 24/7 and I thought I wanted it removed. Maybe more rational thinking on the drive home lent me better insight. I'll keep it...for now. I asked about having my trach removed. Not such a good idea. Dr. Kussin was never in on the initial surgery and the reasons why I needed it, so he too, has questioned it. I told him what went on at Mass General Hospital (Boston) in 2003 when I went to see the leading expert in tracheal issues, Dr. Hermes Grillo. Dr. Grillo was in the OR when Dr. Cameron Wright bronched me and said my trach was too floppy to stay open in its own. All this happened as a result of not being trached according to hospital protocol within a reasonable time. I was orally intubated for 6+ weeks in Florida in 2002, which damaged my trachea. Tracheomalacia, scarring and floppy cartilage, all sum it up. I'm going to have the records from MGH sent to Dr. Kussin. He suggested that during my next tune up at Duke, I can undergo a bronch to assess my trachea and let him "see" it first hand. It's not that bad a procedure. Dr. Randy Garnett has bronched me in the ICU twice while I watched it on a large screen TV, live. They just have to numb your throat well, and having a trach makes the access easier. We'll consider his suggestions because if I can be decannulated, then I can swim and enjoy water activities again. Oh how I miss not being able to dive into our pool and just soak it all up. Even having a shower can be a near drowning experience for me. The best part about being trached (is there a good thing about it??) is that I have adapted to the night time ventilator protocol very well and have thrived because of it. If I did not transition well and fought it all the way, then I would have failed at it and it would have been removed from my home and that's the end of that. However, I did well when I transitioned to nocturnal ventilatory support in my home and have had a better quality of life as a result. That's a pretty convincing argument to keep the trach. If it's not needed, it ought to go. No person has invasive medical surgery just for the fun of it, there has to be a reason for it. We'll talk this one through in the months to come. Aside from a good visit, I told Dr. Kussin that Brian and I are going on a cruise in 2 weeks and he bid us "Bon Voyage". We're going. I'll have the ships doctor monitor my INR each Thursday so my bleeding times are within range. Today, my bleeding time was so sky high it was whacked out! Hold off the Coumadin for 2 days and then restart at a lower dose. Oy vay....the Coumadin game takes some time to get it right. Amen for the technology to get the labs via a finger prick. I also have to lose weight. Nothing I haven't known and struggled with before. I am a prednisone pig and have an appetite every waking moment. I need a pill to turn off the hungry sensors in my brain. Also I have to exercise. The YMCA said "NO" when I have visited them because I am too medically fragile and too great a risk for them. So where can one go and exercise under medical supervision? Back to Norfolk General in their Pulmonary Rehab Graduate program. I've got to call them and see what the process is to get back there. I was there for 3 months, exercising twice a week while I was waiting for lungs at Norfolk. I was the only CF person there and the only one waiting for transplant. Most of the people were ladies with COPD, trying to quit smoking and were now startled that they were short of breath, so they joined the gym. Doesn't 30+ years of smoking do that to a person? Exercise ain' t going make those nasty lungs any better. The other (and last) issue we discussed, was my lack of veins. Nothing new there. My upper arms and chest are blue, with a road map of my new collateral veins running all over. The right side has blue veins everywhere. It's called Superior Vena Cava syndrome and comes from YEARS of medi-ports and vascular access devices in your chest. Every vein there has shut down and my body it trying to build small branching collaterals. It still means when I need a tune up, I have to have a femoral line, which SUCKS!! I have waited going in for a week over the anxiety of having to have a femoral line sewed into my crotch. What a cross to bear, eh? But others have it worse, so quit complaining, Lori. OK family...to my sister Vicki enjoying a Disney vacation now, to the other 4 sisters in Ontario with their families.....know that I miss you all and that I cherish our phone calls and email exchanges. Happy Canadian Thanksgiving in a few days and remember to include us in your prayers. Love your little sister, Lori XOOxooXXxx October 14, 2006 Today my sister and brother in law arrive from Canada to cruise with us to the Caribbean. We are blessed this day has arrived as 12 months ago when this "Bon Voyage" cruise was booked, we did not know if I'd be dead or alive. I was quite sick and we could not for see this far ahead to think it might really happen. Amen! I feel well and have the blessing of Duke to go on this cruise. So for now, "Bon Voyage" and Lord willing, we'll chat again later. Gotta go pack!! Hugs from Lori XoOxOOxx October 30, 2006 Home. It feels so good to be home. Our Caribbean cruise was wonderful! Absolutely a thrill for all of us. My sister Noreen and her husband Gordon celebrated their 36th Wedding Anniversary along side us and Brian had a smashing wonderful time too! He spent a lot of time on our huge balcony, listening to short wave radio transmissions and even up until 2 AM, he was in his pjs on the balcony, in a lounger listening. It was a good experience for him, this being his first ever cruise. He's hoping to go again next year. This from a man who balked at the thought of going initially and said he didn't want to go when I first suggested it 8 months ago. He is an old sea salt now and loves it. Holland America has their own island called Half Moon Cay and it was gorgeous. We could have stayed thee the whole cruise and would have been happy. We had our own cabana with air conditioning, a fridge and food. It was fun to enjoy this new adventure. Stops included St. Thomas, USVI., Dominica, St. Kitts & Nevis, Barbados, Puerto Rico and Half Moon Cay. Although there were a few negatives (like no air conditioning in our Suite), these did not outweigh the many positive points and overall, we will sail Holland America again, Lord willing.
November 14, 2006 I've been silent for 2 weeks as I had a major software conflict that prevented me from logging onto my web site. My recent download of Microsoft Internet Explorer 7 (IE7) has a number of incompatibility issues with other programs and until I could find the solution, I've been locked out of my own web site! The solution was found in the Adobe Users Forum where after scrolling through 4065 messages, I found the one that addressed my problem. I had a DLL (Dynamic Link Library) file that was not compatible with the new IE7 upgrade so the program to my web site shut down each time I tried. A smart geek had already had this problem and he posted the fix to bypass this time out. Amazing. What took me almost 2 weeks to find, took just 45 seconds for me to fix. I owe a big cyber hug to that guy and I sent him one too. Thanks for posting that simple patch that now has me back in contact with my family and other assorted friends. OK. me....Not doing the best I could be doing, but am coddling myself in the hopes that I can buy some time and not feel worse. I had an appointment with Dr. Randy Garnett last week and basically, it all comes down to my sputum. I spit out a sample and it's cooking in the lab. Depending on what it grows out, and how I feel, will decide the treatment plan for me. I don't feel sick enough (yet) for IV's. Not when it means a femoral line. If it were a more simple PICC or Medi-Port access, no problem. I'd be slurping down the drugs now. But when it is such a dramatic affair to get a vein, I don't give up my right femoral vein without a fight. Tomorrow I rotate my oral antibiotics so perhaps that change will cover me better. Little Buggers. They mutate and cause so much trouble. Dr. Randy and I shared a laugh and I like it when I see him in his office. He is the nicest of all the partners in his big pulmonary group. Most times he wants to bash me upside of my head for being stupid, but so far, he has refrained. For some mixed up reason, I got a bill for my ventilator...for $4,600. Seems on July 1st when we switched to Blue Cross, the info never made it to the Vent people and so they have billed me for it in full. YIKES! I've been playing telephone tag with them and today I just sent them the bill back with a copy of my insurance card. That ought to make them happy. I do know I have a small co-pay, but not $4,600. Nope. Take it back if they want to fight me on it. The annual American Academy of Forensic Science conference is every February and this time, it's in San Antonio, TX. I've decided not to go because the conference center does not have a hotel attached to it and that means a few blocks to walk to the exhibits. That makes it harder on me when I have to lug my strolling oxygen cart further. When they have it on a large convention center with a hotel too, then everything is in one place and you never need to leave your hotel. It is easier and works for me, yet in 2007, they have split it up. So no AAFS meeting for me in February. I haven't missed many since I began going in 1997. Maybe I'll go somewhere else that week instead. Like back to Atlantis. Lord willing. I'm dreaming again.... OK Family and friends....I'm still in the land of the Living. Any day above ground is a good day. When it's decided what I'll do for these CF nasties, I'll post it, now that I can get back into my web site. I see a tune up in my future, very soon.......Hugs from Lori OxXoo November 20, 2006 I received news today that my friend, Michelle Champion, of Roseberg, Oregon, died yesterday, Sunday November 19, 2006 at 0223h. Michelle was more than a miracle...she was a genuine odd ball. She had TWO double lung transplants. TWO!! Her first transplant allowed her to live another 11 years, but she had chronic rejection 6 months out and slowly her health declined. Still, she was so happy for those extra years and it livened her up and brought her back to life. But years of chronic rejection took their toll on these precious lungs and she was once again faced with dying. No other lung transplant center had ever re-done another re-transplant on an adult with Cystic Fibrosis. It was too risky, and "...Why give her another chance at living when others die waiting for a first chance?"... so the reasoning went. Finally, after calling on ALL the lung transplant centers in the US., nobody would re-transplant her. She narrowed it down to Duke as having the best outcomes for those with CF, and she attacked them eagerly, praying God would make Duke say Yes. Well, the Lord works in mysterious ways, because she eventually convinced DUKE to list her for a second lung transplant, so then she moved to Durham, NC. to wait. Would she ever live to get a third chance at life? Most die waiting for a second chance, a third was unheard of. She waited. And waited....She received her third chance at life from a generous donor at Duke in the winter of 2005, and I met her in April at Duke Pulmonary Rehab after that. It was later told to Michelle that had the Duke lung transplant team known how really bad her lungs were, they would NOT have operated. She had so much scarring that she should not have lived this long, but here she was, asking for another chance to breathe. As family support was lacking, it was hard on her to be so far from her home in Oregon. No family member could come with her to Duke, so her best high school chum filled that role and together they moved to Durham for the wait. This friend later dumped her, saying that now she had new lungs, she was good as new and all fixed up, and didn't need any "TLC" anymore. This broke Michelle's spirit. We, on the other hand, remained good friends. She loved "Hello Kitty" stuff and I indulged her in collecting these things. She camped out at my home in Chapel Hill when she flew into town for transplant clinic appointments. We loved spending hours in our favorite store, "Southern Seasons", in Chapel Hill, NC. Michelle came back to Duke at the end of August 2006 for a bronch. It was thought she was again in rejection. She stayed at a local hotel while waiting test results and we hung around as I was in for a tune up then. Despite her having new lungs, and I having cepacia bugs, we still hung around as best friends. We used tons of Purelle and were paranoidally cautious. Duke called. Amen! She did not have rejection, and she returned home to Oregon. About 6 weeks ago, she became more SOB (short of breath) and was eventually put on oxygen 24/7. She hated this and thought she was suffocating. She felt more helpless, yet she pressed on, feeling this would be temporary. In the last week of her life, she began to lose weight--alarmingly. She had gotten down to 75 pounds. She agreed to have a feeding tube put in today, Monday at Mercy Medical Center in Roseberg, to help her gain weight. She believed she would rally round and fight this. She did not want to give up. Michelle ALWAYS believed she would beat everything that hit her and she would get better. It was not to be: Her Angel came for her Sunday morning. She was asleep, awoke at 0145AM, gasped, and died. My Friend is now an Angel. She did win. She won her Angel wings. She now has the perfect body she so desired. Free from Cystic Fibrosis. Free from coughing. Free from disease. Yes, she won the battle. She truly was a Champion. Thank you Michelle for teaching me so much. Thank you Michelle for being my Friend. Thank you Michelle for being a Lung Transplant Pioneer. Thank you Michelle for going through a second bilateral lung transplant when everybody said it couldn't be done. Thank you Michelle, for being you. I Love You, always will. Hugs from Lori, until we meet again, in Heaven. Born: February 22, 1974 Angel Wings: November 19, 2006 Here is her Obituary from the Roseburg Oregon Newspaper. Death Notices & Obituaries for November 20, 2006
November 24, 2006 Brian and I had a quiet Thanksgiving a few days ago. Just us. Alone. Dining together. Quietness. His mother was invited elsewhere and she accepted. The first time in 8 years she skipped out on family and dined with a new friend. Strange. His sister, who has been out of the picture for nearly 2 years, was alone with her kids. She used to live just down the road from us but without telling us, she upped and moved 3 weeks ago. She is still in our zip code, and still quiet. His mother is so hush hush and doesn't want to spill the beans about the family's troubles so she stays out of it as much as possible. I have made a few attempts to welcome his sister back into our lives but all attempts have been futile. Something distressing has been going on in her life and she has chosen to withdraw from her brother (Brian) and I. I pray for her. She hates that. So Thanksgiving this year was different, for the lack of family. I've never had such a lonely Thanksgiving. Bah Humbug! Our friends Shannon Parker and her sister Lori Jernigan, called us to wish us a Happy Thanksgiving. Both are feeling well and meeting the challenges of life with new lungs, and both are out of the hospital and spending their holiday with family. They are both prayerfully thankful for their lung transplants and are thankful for surviving another year. Amen. More later. Love LoriOXoxxoo November 28, 2006 The weather here in Southern Virginia is awesome! Today was another sunny day with a high of 72 degrees. This comes when it should be getting colder, yet, I was blessed by sunshine and falling leaves. Our trees are getting ready for winter and the sunset over our backyard is beautiful. Most nights, the deer roam our land and sometimes I take my mega huge 2 million candlepower flashlight and look for them. Hit them in the eye with the beam of the flashlight and they freeze. They are in their mating season now out there, playing wild and paying no attention to drivers or the road. Last year, I saw a thigh on the street. Yes, a deer thigh on the street after it was hit by a large moving vehicle. It was gross. Deer are all dumb when the get into their mating ritual and usually get run over. Anyhow, we have deer here and it's nice. Red Foxes too. My big white cat, Simon, is not thriving. He is "circling the grave" and I think he won't live to the end of this year. He is nearly 19 years old (that's 133 human years) and is lethargic. I hope we can liberate him painlessly and give him a good death. Today was trip to the Dentist day and all is well. Our dentist, Patrick Baker, shook my hand and asked how I am doing, and I said, "Alive. I've lived another year. Any time above ground is better than being 6 feet below ground." He laughed and agreed. We've been his patients for 8 years now. Another great dental check. Yahoo!!! Else wise, I am nearly ready for Christmas. I have done all the shopping required for gifts and have gone to the bank for gift checks and have got cards to write out and send, but all the rush stuff is done. I hate being in the malls in December when the panic is on and the shelves are empty, so I am usually done everything by the first week of December. A lot of my gift buying is done on the internet, so that make sit easier on me. I shop at home and have it delivered. So much easier. I am doing well but Brian says at night, I cough too much. Enough that it wakes him from a deep sleep. He wanted to know if he ought to get up and do chest physio on me, if just to get the junk up so I'd stop gurgling and rattling. I told him "Sure. Go ahead...Beat me". I have not been bothered by it enough to be concerned. A few weeks ago, I donated sputum to Dr. Randy Garnett to see what was growing and I have not heard back yet. I have to call his office again and ask for the results. It's not like me to have let the result sit this long on his desk without hearing about it, but maybe he is busy in the eICU or something right now. I am always coughing up junk but this junk is more sick looking. But not sick enough to go in for a tune up yet. I'm holding out until at least we host our Merry Christmas party on Saturday December 9th, here at our Villa. I am still sad that Michelle Champion died suddenly. She was so lonely for friendship, and deserved to be loved. Her brother was very absent from her life, despite living 10 minutes away. When told at 3AM that his sister had died, his response was "Well, we knew it was coming. We've waited long enough for this". Her mother was not even that bothered, asking that her stuff be boxed up and set aside in grandma's house. Her father was more stoic, but then he focused all the sympathy on his own drinking problems. Her friend in the end, Tyler, moved in to help her get well. It was not a sexual relationship, but one of a 15 year old friend coming back into her life to help her out. He was with her when she died. He changed her pull-ups. He toileted her. He did everything for her because he loved her. Now she is gone. Tyler will now pack his boxes up and move north 80 miles to his fathers house. His life at the moment is a large void of emptiness. Michelle deserved better. Too bad she had to be dying to get the love she deserved. But who better than Jesus to wrap His arms around you and welcome you home? Now, now...she truly knows what love feels like...in Heaven. Merry Christmas, Michelle. You will always be a Champion in my eyes. Love from Lori xxOOxx...still struggling every day with CF and trying to breathe and be a witness for Christ. December 4, 2006 Simon died tonight. My face is puffy and swollen from the raw emotions of crying for the past few hours. Simon w This Big Boy is Simon boy in June 2006----->> We knew that death would come soon. We had mentioned in passing many times, how we ought to start digging his grave now, knowing Simon was on the slippery slope to death. He once topped the scales at a whopping 30 pounds, but lately, lately...he was ill. Lethargic and losing weight. Yesterday I fed him his regular Sunday treat of Tuna and he ate it all, followed by lots of water. Today, he shunned the salmon treat and laid down. Tonight, he took a nose dive. Now he is dead. At about 8:30 PM, Brian came to me and asked me to look over Simon as he was "breathing too fast". I went into the sunroom and examined him. Indeed, he was tachypneic and pale. He also had rhonchi, which indicated to me he either had pneumonia or was heading into congestive heart failure. Either way, he was gulping for air. I called our vet and she personally answered. She came right away to our house with her bag of Vet goodies. Dr. Loretta Carrico (757-548-2000) owns Animal Medical Clinic on Battlefield Blvd in Chesapeake and has been our vet for 8 years now when our feline family moved to Virginia from Toronto. She inherited all our cats and came to enjoy our visits because we took up all her Saturday morning clinic slots with 6 cats to be seen, injected and examined. Well...she said if we ever needed her in a crisis, to call. Thank you Dr. Carrico (Loretta) for keeping your promise and for being there for us and Simon tonight. Dr. Carrico came straight away. At the same time, the phone rang. My friend Krista was calling but upon hearing I was crying and blubbering in sorrow, said she would come right over. Both got here within 10 minutes. Dr. Carrico did her assessment and the options were to have Simon taken to the 24 hour kitty ICU and be aggressive with IV antibiotics and fluids, or to allow him to die peacefully without pain as he was dying and in impending respiratory failure. Brian and I knew what the right treatment plan was for our Simon boy. To let him die painlessly. Simon had such a great life he didn't need to end it on a sour note in the kitty ICU. Now, more than anything, he was entitled to a good death. As I cuddled him in my lap, he received a injection into his muscle which sedated him and also included a pain killer. Within about 3 minutes, he was in his happy place...la la land but still breathing. We talked about what happens next and I sang to Simon. I told him I loved him and that he was the first man in my life and the longest lasting so far. I wished him well on his journey to the "Land of Many Mice" and thanked him for being a best buddy to me. I held him closely and cuddled him. He mustn't be alone. No one wants to die alone. So I held him close, with comfort and sang "You are My Sunshine". He stopped breathing. He was gone. Dead. Dr. Loretta Carric We are Thankful to Krista Childress-Parks who came right away when she heard me crying and blubbering over the phone. She dropped everything to come comfort me and I so appreciated you being here with us, Krista. I Love You. Dr. Carrico came in our time of great need. Some will scoff at us over wasting tears for just a cat. This does not bother me one iota. Being childless by choice, we choose pets to stand in the role of being the warm blooded creature we can love and lavish attention on. Until you have loved and lost a pet, you are not qualified to speak your two cents worth. Thanks Loretta. Love Lori & Brian, and the 5 other kitties you keep well and up to date on shots. Thank you to Pet Cremation Services for offering a valuable service. I would not be happy knowing Simon was in the Chesapeake Landfill Dumpsite and where do you turn when you can't bury your pet? PCS saw a need for this and now cremate small and large (horses too) animals. Thanks Chris. December 5, 2006 Today was better. My sadness has lifted. Many co-workers emailed me messages of support and we have photos of Simon growing up that I looked over for laughs. It's time to move on to Christmas and the impact one person left when He died. It rocked our world! Lori HugsXoOOxX December 7, 2006 Tomorrow I'll pick up Simon's cremains and buy a suitable receptacle to put him in. I'll look for a cat figurine and transfer him to that. Things are good. The healing has begun. Let's go back to May 2006...when I was flown by air ambulance from Norfolk General Hospital to Duke University Medical Center for treatment of an infected femoral Medi-Port. You can scroll up to May 7, 2006 to read the details. Well the air ambulance company, MedJet, approached me about telling my story to their newsletter. You know...good PR and exposure for them. Here is the story they wrote about my adventure. I have proofed it and it is 100% accurate. It is not clear enough to read it, but you can see the outline of it and the photo of me. Cool article! Another very warm day here in Virginia. Too warm for coats. Brian just wore a short sleeved shirt without a jacket. It is not this warm this late in the year. Not to complain, just glorifying in the sunshine. December 19, 2006 It is come to an end too quickly...2006, that is. Where had the time flown? What have I done the whole year? Gosh, it has gone by much too quickly. We had a wonderfully successful Merry Christmas party here on Saturday December 9th with 73 people coming to enjoy our house, friendship and food. It was a tremendous day filled with much excitement and were it not for a few special elves who helped me out, I could not have pulled it off. Donna & Jim Price, Leah Bush & daughter Austin, her friend Chelsea, along with Carolyn Johnson, a mega huge Thank You for pulling my load when I needed help. I never stopped working the whole day long and wished I could have sat with each and all of you to chat, but so many people, so much to do, and I had to be the Hostess of it all, so I was up and down non-stop, and it was perfect. Just understand that I am so thrilled y'all come to celebrate with us and throughout the year, don't be a stranger. Continue to call on us and ask how I am doing, and come over for a visit. One of the frequent comments was about the 2 cheesecakes I had ordered online from www.elegantcheesecakes.com They were the dessert highlight and hopefully, I'll be able to have them on the menu again next Christmas as everybody raved about how good they looked and tasted! Let me end by saying to those who missed this social gathering, you missed a grand affair! To those who came, you were treated to a wonderful spread of food and noshed with old friends and made new ones. Thank you for coming and Lord willing, I'll be alive to celebrate again next Christmas!
After a wonderful Christmas party, early the next morning I flew off to Disney World with my friend Donna Price. It was a week of partying in the Magic Kingdom, Epcot, MGM and at the Grand Floridian. Brian and I always stay at the Grand Floridian resort in Walt Disney World and it truly is the Grandest resort they have. This was my 6th stay there but my first time at the Sugar Loaf concierge Lodge and what a wonderful time we had. Just the 2 of us. Here are some photos of our grand time at Micky's Very Merry Christmas Party.
Afternoon Parade Dale hugs Donna Lori and Monsters Inc.
Chef Mickey hugs me The Grand Floridian Resort & Spa
Christmas is just around the corner and I wish Brian and I could be in Toronto with y'all to celebrate. What a grand time that would be as we celebrate the best birthday gift ever given. The birth of a tiny babe who came to die for my sins. Your sins too. It's not about Santa and elves and snowman, but about being born in a stinky barn with cows and mules hanging nearby. About wise men and shepherds who came to celebrate. About a gift Jesus died to give you, and me. Amen for His gift of salvation and for preparing all of eternity for me...and you too! I am waiting to hear back from Duke about being admitted for a tune up. It's way over due and I have to get these crappy lungs into the hospital for aggressive intravenous antibiotic therapy. Yes, sadly that means Christmas in the hospital, away from family, but Brian will be there at Duke with me and as long as we have each other, we can cope. Oh yeah....Jesus will be there too! And God too, so I'm never really alone, am I? Merry Christmas and when I know I'm heading to Duke, I'll post here. Love from Lori xxOooXOoooXXX December 21, 2006 I am wait listed for a bed at Duke. THat means when they have a bed on the CF ward, in the isolation unit, I'll be called to come for it. They said it could be on Monday or Tuesday, everything depends on discharging people, or maybe when they die. Then it opens a bed and I'll have a reserved one. I have to be admitted to the CF "cootie" ward so that I don't interact with other patients with CF who might get sicker if they get my nasty lung bugs. As I am in end stage lung disease, I have these "hanging on" bugs which make it more difficult to put me somewhere where I'll be isolated. They have 4 vented and isolated beds on the CF floor at Duke and I always get one when I am admitted. So now we wait. Yesterday was a pretty bad day for me, breathing wise. A few times, when I was lying down, I thought I'd never catch my breath. But eventually, it slows down and I do drift off to sleep, however little that might be. Friends and Family, Merry Christmas, Love Lori OXXoox December 26, 2006 Duke called. They said to come tomorrow, Wednesday, as they will have a bed for me then. Whew! This is unusual for me to wait a week to be admitted electively, but then if I were thrashing around on the floor a lovely shade of blue, I'd have been admitted directly without delay. With Christmas and all, I'm certain it took some arranging for them to get the staffing up to snuff for the "CF Cootie Corner" that I am always admitted to, as it requires a more skilled RN and a RT right there 24/7 due to the ventilator. Works for me. Tomorrow Brian will work half a day then come home to get me. It's a 4 hour drive to Duke, then he'll see I get settled and then turn around and drive home. No complaints from him. Brian is so giving and compassionate. The Lord knew I'd need that in my husband, so he sent Brian my way. Thank you, Jesus! I expect this CF tune up to last 15 days at the shortest, 21 at the longest. You can pray for me, please. I'd appreciate that so much. OK Family and Friends, that's my destination for the next bit so excuse me for not being in touch with you. Pray that I am responsive to the IV antibiotics and that I come home alive, not in a body bag. And please pray for Brian, that his faith and strength will be renewed through this. With much love, see ya next year, Lord willing, Love Lori OOXxxoooXXX Welcome 2007
I am blessed to be here, writing this update, even as I am 4 weeks overdue and in trouble with some of you. I have not been able to integrate my old web pages under Net Objects with my new program under Macromedia Contribute, so I am having difficulties now that I can't solve on my own and am taking up way too much time trying. It's been 2+ weeks of my frail feeble attempts to get my pages updated and look, I have not accomplished what I set out to do, so the simplest way is to make this work and run with it as is.
I was reigning in the New Year in my bed at Duke Hospital--Rah Rah Cystic Fibrosis won that round. Not the most optimistic way to begin a new year, but at least I survived and am alive. I was in for 15 days and come out plump and pudgy. Those med's they pump into you make me gain weight and body fluid. Not a nice feature for me, Mrs. Blob. My friend Jennifer came to visit me at Duke and make me smile. She always treats me as a Princess should be treated and she spoils me too. Thanks Jennifer! Brian drove down to be with me on weekends and to bring me back to reality with all the bills he brings. It's me who is the bill balancer and so even sick in bed on the vent, it's Lori's turn to get the bills paid. Done. A few doors away, an online friend of mine was in too. His name is Bill. He is a Duke Double Lung transplant for CF and his wife Diane was rooming in with him. They got the largest suite on the floor, a real palace, with a huge sofa bed and real furniture. I always get admitted to the CF Cootie Corner so there is no chance I'll ever have a night in the Palace Suite. Diane came to visit me and provide some badly needed company. I actually was allowed to leave my room near the end of my stay and we went to the cafeteria and bought some Snapple. Just a few days before my discharge, Bill and Diane headed home too. They are constantly battling medical issues with little down time, so it seems. They don't unpack their bags when they get home because they never know how soon it's back out the door and on to Duke for another urgent issue, yet they remain steadfast in their Christian faith that the Lord is in control and cares very much for them. Amen we can live each day knowing God is in control. When they do have some free time, plus their traveling laptop, they have a new web site called: dukelungs.org Click on over and see what Bill and Diane have done to promote the Duke Lung Transplant program. The nice part of this tune up was that the intern got my right femoral vein on the first attempt and did it so painlessly! What a blessing it was for me to trust him that he would do it and he did. Under ultrasound guidance, he did it and I was not blubbering in the bed crying and in pain. Thank you Jesus for making that IV placement go so well for me. Thank you Lord for allowing me to even have a vein for Duke to use. Dr. Kussin and I talked about the time down the road when they can't find a vein and what then? Nothing nice, to be sure. We'll cross that bridge when we come to it. For now, I an home, recovered, and doing fine. Got some new CF nasties coming out of my trach but it's not as bad (yet) as the stuff that brought me down to Duke, so I'll just observe it. I have an appointment new week with Dr. Randy Garnett to touch base with him and to check in with him. I have no complaints. I did have a birthday too. Just days after I was discharged from Duke, I had another celebration of life. Another year to thank the Lord for allowing me to breathe. Amen and bring on the showers of blessings! OK Family and Friends, I am still alive and kicking, and will have to make this work until I come up with another web layout. Stick with me, OK? With much love and fondness for your visits to check up on me, Love from Lori xxOOo
January 30, 2007 Today I had an appointment with my favorite pulmonary doctor in Virginia, Randy Garnett. Brian went with me and I had a good check up. We went over my pain issues (?osteoporosis), driving while on buckets of pain med's, and can I go to Colorado? I have had wicked thoracic/chest wall pain for 3+ years now and of course, as I cough non stop most days, it absolutely kills me and slams me with pain. I began seeing the doctors at the Duke Pain clinic and they helped me get a handle on it with Fentanyl patches. That has had its ups and downs, but the worse problem is getting the pre-authorization for the patches. It is a nightmare of faxes and phone calls and paperwork for Duke and Blue Cross, and I hate that it bogs them down for days. I have cried over how slow it takes to get the OK for my pharmacy to dispense the patches all because faxes have gone unanswered. I hate that Duke has to be swamped down in paperwork for me every month, all because of my prescriptions. It's not fair to Duke to take hours of their time to get these med's authorized. I hate the paperwork. Well anyhow, during my last tune up at Duke, the Pain team came to see me and it was decided that I would switch to morphine, since that does not require pre-authorization. They also wanted to add a new pill to the routine, something called Lyrica, because it would boost the effects of morphine. I came home with a prescription for them both but dang! The Lyrica requires the same pre-authorization that the patches did and that meant we were back to days of faxing and phone calls and going no where. I cried in despair. I was trying to save Duke from this mountain of paperwork, only to find this new, cutting edge drug required a huge mountain of paperwork to approve it. So out of anger and frustration, I called Duke and said..."I've had enough. Stop working on getting the Lyrica authorized because I'm not going to do that to you again (making them do days of paperwork for me)". So I decided to go back to what I know best...back to the patches. A 3 month supply costs $3,450. I pay $30 for it. Duke still spends 3 days getting the paperwork pushed through. It's a lose-lose situation. Amen Duke hasn't kicked me out yet and will still see me in CF clinic. So I'm wondering, do other adults with CF have chest/rib/back pain too? I asked Dr. Randy Garnett about attending a forensic meeting in Denver, Colorado and he said "No". Not negotiable. I'd be retarded to go, with my lungs being poorly and the elevation being too high for enough oxygen, I'd be a hospital admission just waiting to happen. So that settles that, eh? No meeting in Denver for Lori. Next.... He said my chest was quite wheezy and junky. Would I increase the Albuterol neb treatments to every 6 hours and decrease the dose to get over the hand shakiness I get? Sure, I can do that. Easy thing to ask. Not difficult to implement. Just suck back on the neb more often and keep those wheezies away longer. And of course, I've got to lose some weight. Call Ripley's cuz that's a 'Believe it or Not' story. An adult with CF who needs to lose weight. I also asked Dr. Garnett to let me keep him my back pocket in case I need to be admitted here in Norfolk. While I have taken all my CF care down to Duke for the last 3 years, I still need to keep Dr. Garnett close by so I can tap on him for resources when I need him. Perhaps there will be an emergent admission that can't wait for a 4 hour drive to Duke, so can I return home to him, like a lost child? Yes he said. He's awesome. I am doing well and feeling better. More another day. Love Lori Deer Sighting...February 1 Right now, out of the corner of my eye, I spotted something in my back yard, moving. It was 3 Deer. They were foraging for food and corn on the ground. They meandered over to my neighbors patch of collard greens and began to eat their produce. I called Brian on his cell to tell him very happily, I was watching deer right in our backyard! It was wonderful. The little doe was hopping all over and darting in and out, like she was playing games. It was beautiful to watch. Apparently they come out at dusk and hunt. Brian has almost collided with some on our driveway. But now I saw it with my own eyes. They are beautiful. We are also experiencing an abnormal Canadian cold front moving in as the temperature drops to freezing overnight but climbs again to about 45 during the day. That is cold for us! I woke up with a sore throat today. Unusual for me as I am trached. I never get sore throats since being trached. Will keep an eye on this and hope it goes nowhere. I had an afternoon nap which rested me well. OK...going to sign off with a Happy 50th Birthday to my sister Nancy! Wish I were in Toronto with you to celebrate! Have an awesome surprise weekend that your sisters have planned for you. 50?? Yikes! Love Lori February 8 Am holding my own and not feeling much worse, but my CF bugs are making their presence known. I will be at a CF clinic appointment next week on Thursday with Dr. Kussin and I hope I feel better by then. I'm not feeling badly enough to go in for a tune up, but we know that can change quickly. Will watch things. An internet friend named Jennifer, recently finally had a CF diagnosis confirmed, after something like 35 years. She had all the signs and symptoms of having CF, but her doctors believed you can't develop CF in adulthood, so she fell through the cracks. Duh. You have to be BORN with CF. You just don't develop it. It is always there, but the severity of it can range from being born dead at birth, to undiagnosed until adulthood. The blessing is that she is now getting the correct treatment and is being seen at a CF clinic. The advent of DNA analysis in the diagnosis of CF has opened doors. Cases that were sitting on the fence, have been pushed off the fence into the CF domain, with positive genetics. Kids being born now with CF, have such bright futures! No longer are parents being told to take them home and expect them to die. So much has changed, for the better. That comes from thousands of people raising money for CF research. The 'Great Strides' walks in the US, and 'Shine-A-Rama' in Canada, have brought millions of dollars to the research tables for these wonderful gains. To be sure, thousands have died to get this far, but with charity drives and fundraising, come the milestone breakthroughs we are holding our breath for. And that breath is precious. Too precious. I have a little friend named Holly who has CF. I can see her doing whatever she wants to in life. No limits or restrictions. I see her marrying and having children, having a future. Becoming a doctor. CF won't make her a pulmonary cripple. Her horizon is limitless. OK...nap time for Lori. It's 2:31PM and time for a Vest session and some nebs. Gotta fight these nasties nonstop. Let's chat again soon, Love Lori. Later....I woke up and waited for the Deer to show. at 5:05 PM, I spotted them A pack of 10 Deer were in the neighbors yard, grazing on their cauliflower. There were 2 baby does and the other 8 were adult females. Again, it was so beautiful to see them up close, a few yards from my bedroom window. The neighbor called to asked was I watching for the deer? She said she saw them but could not count them. We chatted and laughed, and indeed, there were 10 of them. They were over being upset their collards and cauliflower crops were totally eaten up, but they laughed it off. Good natured folks. As dusk approached, they retreated back into the forrest...until tomorrow. February 12 Today I had lunch with a few of the ladies at the office and it was a nice time to get away and chat. A sunny day greeted me today and it was a tad bit chilly, but not a snowflake to be seen. My boss commented that I looked a tab bit puffy. It's true. I am bloating up again and dealing with more nasty bugs. When Brian sees me day in and day out, these little things sometimes go unnoticed. Bring in a new person, and they can tell right away. Thanks for pointing that out, Donna. It means more Lasix tomorrow to pee of the excess volume. When I returned home from the office, I had some play time with the kitties and I noticed Taylor's left hind leg was dragging, as if it were limp. Plus, I'd noticed she was drinking gallons of water. Non-stop drinking. She had also lost weight. I figured she was upset over Simon's death and was grieving. Pets do get depressed. Simon was her best pal for 11 years, and now she was alone. But that left leg bothered me. I thought maybe she had slept on it, and it was just lame. She would "walk it off", but no, this didn't happen. So I called our Vet, Dr. Loretta Carrico and went right over. The exam of her leg showed nothing traumatic. No injury, wound or break. Then I described the weight loss and excessive thirst. Her brain began to think. My brain began to think. Dammit! How had I missed it?? All the signs were there. Why hadn't I suspected it all along? Taylor has Diabetes. Now it all made sense. Everything came together to form a clearer picture of the struggle our Taylor girl was going through. She was an undiagnosed diabetic. Her blood glucose was 369. She should be around 100. She was also spilling sugar into her urine. No ketones, Amen! Her body chemistry was so deranged, it was eating her own body fat for fuel, which is why she dropped 3.7 pounds so quickly. As for her lame leg, it might be neuropathy, which apparently, cats develop with diabetes. They lose sensation and feeling in a leg, which might be the first clue something is wrong. In this case, I should have clicked when I saw the weight loss, polydipsia (excessive thirst), and now her lame left leg. We are doing what we need to, to get her feeling better again. It will take about a week for her sugars to get into control before she feels better. The best news is Taylor will be OK. She is now on an insulin injection each day. Brian gave Taylor her insulin injection this morning. That's the first time he has done it and he is a pro! So now we monitor her blood glucose levels with the Vet, probably move to twice a day shots down the road when she plateaus, and treat her normally. Puzzle solved. Our fur ball has diabetes. Now she gets more extra smooches and cuddles from us. And I thought she was sad over Simon's death. She probably was, but the diabetes trumped that. We have our little furry girl back home with us and now she will feel better as she is being treated correctly. Modern Veterinary medicine is awesome when it can diagnose the problem correctly, treat it, and return your little furry rascal back to your loving home surrounded by pet owners who promise to love it and smother it with cuddles. Mission accomplished. February 14 Happy VD! Everywhere, Love is in the air. I had a huge, gigantic heart shaped chocolate ship cookie sent to Brian as a surprise and he enjoyed all the attention he got, then ripped into it and ate it all! It was well liked and not a crumb was left behind. He got lots of oohhhhsss and aaahhhsss at the office. I Love You, Brian.
Later today, I am heading down to Durham. I have clinic appointments tomorrow at Duke and I prefer to go down the night before, rather than have to drive 4 hours in the early morning before clinic. Brian always goes with me, but today, I gave him the day off. Why? Well, I drag him everywhere to all my medical appointments, and he dutifully goes, but I thought he would prefer to stay home as he has a consultant coming to his office to show off something new that the PBS affiliate might buy, and he wanted to be there. No bigger. He ought to have some time off, so I told him I would go to Duke alone. He was not too thrilled about that. I'd rather split the driving by going down the night before, which convinced him. I'll check into the hotel tonight, meet up with my friend Shannon, who is at Duke, and take her out for dinner. Then rest up and get to my clinic business tomorrow. After CF clinic is over, it's a 4 hour drive home. I should get home about 9PM Thursday. Brian said he hopes I come home. He meant that maybe Duke might suggest I be admitted for a tune up. No way, not right now. I have a few things to do that need me here for the next few days. Plus, I am not feeling that badly to want to have a femoral line placed for IV access. I still have some juice left in me to fight it out before I concede that I ought to go in. Yes, it seems too soon after my last admission, but my bugs are on their own schedule and they are playing hide 'n seek right now. I feel confident I'll come home and at worse, Dr. Kussin will suggest I come back in a few days when they have a bed in the "CF Cootie Corner" just for me. We'll see. Lord, this is in your hands and I Trust You. Just bring me home safely. Brian gave Taylor her insulin injection again today and he is taking more notice of her special needs. He is more empathetic with her now, in light of her diagnosis of diabetes and her frailty. She is 11 years old and such a gem. She is still lapping up gallons of water, but this will subside as her body adjusts and the insulin injections do their job. All else is good. We are excited about the RV adventure ahead in late April when we will go visit my family in Ontario, Canada. Out of my 5 sisters, 4 live in Ontario. We will visit all 4. The 5th lives 3000 miles away in British Columbia, so we won't be driving out to see Vicki this time. We can't take any kitties with us, but not to worry. They will have a live in housekeeper looking after them and giving Taylor her insulin injections every day. The open road calls and this will be a wonderful adventure for us both. I can hardly wait. February 17 I am safely home from Duke. I did the clinic rounds on Thursday. The Pain clinic achieved my goal of coming home with a prescription for a short acting med for better pain control. The pills I was on for breakthrough pain, took 1 hour, 20 minutes to kick in. I timed it. I would have to lay down and cry quietly until the escalating thoracic pain subsided. I was not going home without some med to make that wait time less. Mission accomplished. The Pain doctor was quite firm with me that she is at the end of her rope with me. I have exhausted all available options and she can't help me any more unless I agree to either go with 1) the implantable pain pump or 2) go on methadone. Neither option works for me. I am not a candidate for a subcutaneous implantable pain pump as venous access is so difficult and I can't come back to Duke for the 6 weeks of adjustment time it might take to get the dose worked out correctly. It has a cartridge filled with morphine that needs filling every 1-2 months, but titrating the dose is difficult at first and I can't stay in Durham for 6 weeks to get it perfected. Dr. Kussin also agrees this is not an option for me. As for methadone, no way. It is the drug for junkies and heroin addicts and I won't be caught alive with it in my possession. Normal, happy people are not taking methadone. Only strung out junkies looking to break the cycle of abuse, take methadone. It has a bad reputation and I want nothing to do with it. Period. Done. Which means they are through with me too. Not agreeing to take either step 1 or 2 of their options, means the Duke Pain clinic wants me to go away and not knock on their door for help. Pompous bastards. They are supposed to be there to help through all stages, and now they have laid down the line. Don't come back to see us. We are done with you. I thought in my head that they ought not worry, as I'll be dead in a year. Wait...take that thought back. I don't want to be dead in a year! I want to live longer with my beloved Brian! Screw the Pain doctors and their lack of empathy. Pain is what the patient says it is. I just don't want to die in pain. Lord, help me deal with this issue, please. I did better in CF clinic. We agreed to add Avelox to my current med's to try to buy me some time before having to go back in. I'll try it for 10 days and if not better, call for an admission. So soon after my last one...but I know I need one again. My sats were 93% on 8 liters O2, and I was sob. Lots of rales, rhonchi, and yucky sputum. Time for a tune up. But I wanted to come home and get things done before going back in for 2 weeks, so they agreed to that. I did leave with a prescription for that new quick acting pain med and that was my goal accomplished. Wahoo!! I'm excited about getting it and hope my pain goes away faster than in 80 minutes, which seems unbearable when you are in bad, 10+ pain. It is Morphine elixir, every 6 hours, and I can dump it down my feeding tube if I don't want to swallow it. Great because it tastes very vile. I was hoping to bring Shannon home with me from Duke but she was not ready to be discharged. We did go out to dinner, to break up the monotony of being an inpatient. Dinner was good. I heard from my sister Nancy over the phone and she is excited we are planning on coming up to Toronto for 2 weeks in the Springtime. I wished I heard from all my sisters every week. Just to hear their voices and say I Love You. Later, it will be too late, and just bygone memories. At CF clinic, this time the social worker did not come see me. I like him, but he was not there this day. I told the CF clinic Nurse Practitioner, whom I like, that some days it's very hard to see beyond that day as my breathing is so difficult. There are days I wish I weren't struggling to breathe, and dream I were dead instead, so I would be in Heaven without any pain. She asked if I was depressed. Nope. Not clinically depressed. Not prozac depressed, but just sometimes sad for what I'll be leaving behind. Brian is so tender-hearted I don't want to leave him. He can't make it on his own. (He probably can, but me needing to be there makes me feel I can't die just yet). So I am not clinically depressed, but I am sad for (possibly) dying before Brian and leaving him alone. We talked about what might cause my death and I speculated.. either it might be an acute PE (pulmonary embolus (clot)) or just CF winning in the end. Respiratory failure in light of a DNR order. I'll know when it's time to say enough is enough...When I've had enough and I don't want any more aggressive treatment or interventions. DNR me and offer comfort measures, please. But then, who knows, I could be hit by a bus! All that thinking could be wasted if I were run over by a bus! Then I'm dead instantly. Bam. One bus or one car. Dead. So in the end, it's God's call. The only people who know they are going to die on a given day are those committing suicide and prisoners awaiting capital punishment. Now I am sure of this: The Bible does not mention eternal damnation and Hell for suicide. The Bible does not discuss suicide. So I know those who have done this selfish act, even those who professed to be born again Christians, are NOT lingering in Hell, but are in Heaven with God. I am certain of this. But it's not the way I'll end my life. No way. My life is way too precious for me to cut it short by this selfish act. Suicide only hurts the survivors. The guilt and torment they go through is so very selfish for the one who heaped this upon them. It is a cop out of life. I'll have no part of it, thank you Jesus. I tried to meet up with my friend Jennifer while in Durham but in the end, I had a nap time instead and was too tired to go out for dinner. Jenn, rain check please! Next time I owe you dinner and I'll make good on it. Take care, my sisters, and my family. I'm still hanging on of this so called ride of my life, and loving every minute of it! Call me. Let's chat. Love Lori XoOx February 21 We have enjoyed wonderful Spring like weather here. While most of the NorthEast is under 100+ inches of snow, we are enjoying sunny days of 64 degrees and going without coats. Wonderful and uplifting. My friend Shannon was discharged from Duke and did get home. Good news. I am on that different antibiotic I began last Thursday but so far, nothing has changed for the better. Maybe a few more days. I have a 10 day prescription. I have my travel bag ready to go, should I agree I need to go to Duke for a tune up. Taylor, or 11 year old cat with new onset diabetes, went for a check up on Monday and her blood glucose level has responded nicely to the insulin injections. Her reading was 139, down from 369 when untreated. We will bring her back to the Vet in 2 weeks for another glucose test, then bring her in for an all day glucose curve, to see if she needs 2 injections a day or if 1 will hold her. She is doing better. We can see some improvement in her health. Amen. That's my short entry for today. I am blessed to have awoken to another day and with the sun shining in my room and Puddy cat purring on my chest, it's going to be a wonderful day! Love Lori XXooOOXx February 23 I spoke with Duke today and we are waiting for a bed to become available before I head down for a tune up. "Perhaps Sunday", they say. "Thanks" I said, and replied Sunday would be great so Brian would not have to take a day off work to drive me there. While he has something like 88 sick days in the bank, rarely does he use them. He is way too healthy:) That said, in an instant he'd drive me to Duke, regardless of the day of the week. Still, I look out for him, and Sunday would be better. This tune up, I am bringing my new HP laptop with me. First time doing this. Certainly, it will alleviate some of the boredom, plus I can listen to Big Band music 24/7. I can read my email and update this web diary. Kewl! It's been 7 weeks since my last admission, which is keeping with needing to go in for IV antibiotics approximately every 6-8 weeks. Sometimes I have stretched this longer, but it's time. My lung bugs are knocking on my bronchi telling me...it's time. Our diabetic cat Taylor, has responded to the insulin injections, and while she appears better, she is still sickly. She gets extra snuggles and cuddles by us both and she likes licking pretzel sticks, so I oblige her taste. She is still on once a day insulin injections but that could change. I hope not. Twice a day would really be a challenge for us. But hey...whatever it calls for, we'll do. She's our little furry feline. Again, a beautiful day here in Tidewater. I called home to speak with Sister #1 and they have lots of snow still. After upper state New York was dumped on with 110 inches, their city of Welland, Ontario, also got a large dump of snow. To rub it in, I went outside to spray Roundup on my crab grass, it was that nice outside, plus my grass is green and my violets are blooming. No snow here. Just how I like it too. OK Family and Friends, I'll close here and ask for your prayers as I return to Duke for 16 days to help with my Cystic Fibrosis management. All prayers welcomed! With Love, Lori xxXoOOxxXx March 1 Well Family and Friends, I am here at Duke and I am sick. I was admitted Monday, and within 24 hours, caught a stomach virus going around Duke and the VA hospital. It's called Norovirus. It starts 12 hours after contact with the offending virus and is usually done with in 3-4 days. Today is day 3. Yesterday, I was so very sick. It started with non stop vomiting. I mean like every 12 minutes, I was puking my guts up. After about 12 hours of this, I had nothing left to puke out, just green bile. They gave me pills to swallow, but guess what? They were all upchucked. Then they gave me IV Zofran, but I was still retching non stop. Then came Composine pills. If I were to throw that pill up, they threatened me with a rectal suppository. After I threw up the composine pill, I never told anyone I'd chucked it, not wanting to have rectal med's No way. No sleep for me for at least 36 hours as I dealt with the nausea and vomiting. When that ended, it was diarrhea. Massive watery diarrhea that soaked through everything. Every time I coughed, I lost it. I went through 8 pairs of clean undies doing this, then gave up and stopped wearing them. Still, every 20 minutes and with every cough, I had watery diarrhea. They took some stool for the lab to rule out C. diff which came back as negative. Good. So now we know it's more than likely this nasty stomach bug. The Durham VA Hospital, it's right across the road, and they had to close visiting of outpatients due to 50 patients being infected. By tomorrow, it should be gone and I should be feeling better. Whew....just back from the bathroom. Non stop pooping. Please Lord, make it stop. I am on a hydration IV for all the fluid loses I have experienced. I have lost 8 pounds since being sick, so there is a good side, sick as that sounds. My nurses have gone over the top in showing me empathy. One Angel RN took my laundry home tonight to wash it for me. She will bring back my clean undies tomorrow. What a blessing she is to me, this Angel RN. I am on isolation for this virus. The worst is now over, they assure me. I have not yet seen Dr. Peter Kussin, and I won't this admission as he is rounding in the MICU this month. In his stead, I am being attended to by Dr. Hargett, his office partner. Nice, tall, handsome guy. I don't recall having him care for me before, but hubba hubba....bring him in anytime. The Pulmonary Fellow, whose name I can't spell nor pronounce, is a genius in my eyes. Why? He cannulated my right femoral vein on the first try. In 20 minutes, totally without pain, he threaded a triple lumen catheter into my right groin for IV antibiotics. I love any doctor who can do it without causing me to scream, cry and swear. His gentle touch and assuring voice made the procedure go well. Thank you Jesus for sending him along. Today is the first time I felt well enough in 4 days to get my email. I have my new laptop with me this time and I am enjoying reaching out and emailing. You have to be very careful that someone doesn't try to steal your laptop when you are not looking. OK family, thanks for calling me today, Noreen, Dolly and Brenda, and for praying with me. I was overjoyed just to hear your voices. Thank you sisters. It's time for bed. But in minutes, I'll be right back up, in the bathroom, on the toilet, feeling miserable again. This too, shall pass. Pray for me, please. Love from Lori @ Duke 919-681-7813 March 2 Good Morning. Actually, I never slept. I've been awake all day and night dealing with this stomach virus. It's called the Norovirus and on the news at 3:30AM today, they said that the Hyatt Hotel in Washington DC has been closed because 150 guests have come down with the Norovirus and so the hotel is being sealed off as an isolation unit. The good news is that once you contract the symptoms, they should fizz out by 4 days and you'll be over it. Today is day 4 for me and already, I am not running to the bathroom as much. I think I am on the tail end of it now and I have prayed many times for it to be over and for me to feel better quickly. I have lost 8 pounds in 4 days, so that is a bonus, but that should never be a good reason to want this nasty virus.
I have missed Brian so much these last few days. But I would never want to expose him to this virus intentionally just to be by my side. The staff who come into my room and gowned and gloved and take precautions so as to not spread it to another patient. Yet somehow, within 20 hours of being admitted to Duke, I picked up this bug. Some one passed it along to me. We'll never know, but sometimes coming into a hospital environment can be dangerous for all the diseases it can expose you to. So many "bugs" live and thrive in hospital environments, and healthy people can normally fight them off but I am immunocompromised so the bugs generally attack children, the elderly, and the sickly, first. And I was an open gateway for it to walk right into my body and set up house. This too, shall pass. Gotta go...the bathroom calleth... Good Evening. It's nighttime and I am feeling better. Amen Jesus. The nasty diarrhea is not as frequent and I am feeling not as sickly. This Norovirus should have burnt itself out now, so I should be over it by another 24 hours. Amen and good riddance. Go to another host and make someone else miserable. Brian comes tomorrow and I think I won't be contagious and risking his health, but he can fight it off. I have laid in bed all day and done nothing. I was too bored to watch TV as I never watch soap operas at all--ever. The channels here are mostly hospital education. How to inject insulin. How to relieve angina. How to walk with your new hip. Whatever. So I am feeling better and from here on, wonderful things will happen with my healing and recovery. A good sign I am almost over it? I ate 2 chocolate chip cookies for dinner! With hugs, Lori Sunday March 4 Today is the Lord's Day and the sun (and Son) is shining, bringing new blessings into my hospital room. Brian arrived early after having breakfast at the hotel and he prays for a safe journey back home again. It's a 4 hour drive with sunny skies and open roads ahead. Thank you Jesus for answered prayers. The awful Norovirus I caught has nearly almost left my body, but We were fooling around with my web cam and here is our morning photo. I hogged the frame but there is Brian in the rear looking on. The weekend doctor rounded on me today and said I am making progress and to hang in and stay the course. He thinks I ought to be able to go home next Tuesday, which is March 13th. Fine by me as I plan to return to work on the 20th. So long from my hospital room at Duke and Thank You for your prayers. Please continue to ask for healing for me when you do pray. All prayers are appreciated and welcomed, in the name of our Lord and Savior Jesus Christ. Love Lori XoOxxOX March 7 It's been a few days since I last wrote and I feel so much better now. Gone is the nasty Norovirus that plagued me relentlessly. I am not sleeping much at nights. Don't know why but my sleep-wake cycle is screwed up. I know it will all revert to normal when I crawl into my own bed at home. It always feels so familiar to pull back the sheets and crawl into my warm, waiting bed. Then, Brian let's the furry pocket pets out. Let the games begin! My friend Laird calls me every day to check in and tell me of his new thrill seeking adventures. Laird is a Duke Double Lung transplant for CF and at age 57, he is remarkable. He calls me atop Mount Tamarak (in Idaho) to say he is downhill skiing that day having a ball on the toughest trails. Laird is always so joyous to be using his donor lungs to the max! He wishes his donor family knew how this gift of lungs changed his life for the best, but they have never returned his inquiries. Laird could be the poster boy for the miracle of lung transplantation. Go Laird! I am infusing Vancomycin every 18 hours, followed by Zosyn every 6 hours, Septra is every 8 hours. I showed the doctors on rounds today how my sputum is changing from bright, isolation gown yellow, to a darker, sludgier yellow, and they wanted some. So I hoarked out a sputum sample for the lab to play with. I am going home on Tuesday March 13th. Brian will come and get me. It's been beneficial to have my laptop with me. I've keep up with my email and have done some searching and stuff. It also pushes the boredom away. Must mean I am feeling better. I am. Thank you family and friends for your prayers which have again, sustained Brian and I. Chat again soon, Love Lori.
March 8 Good Sunshiny Morning! I awoke to the muted sun flooding my hospital room with light and took a moment to thank the Lord for bringing me to His beautiful day. Even while lying here in this hospital bed, I could see His beauty in the morning sun. I asked the doctors if I could go to the gym today to walk on the treadmill but they say as long as I continue to have diarrhea, nope. It has gotten better. It is almost over (I think) but still, I am a walking cesspool of germs right now so please, no going to the gym where other people, like fresh transplant patients, are hanging out. My Angel RN did another load of laundry at her house for me last night. She brought my clean clothes to me today and how thankful I was for her willingness to volunteer to wash my clothes. Duke does not have a washer or dryer on their floors. I said I would even buy one of each for them, just to have it available, but there are no hook ups for this service. So when you are away from home, you sometimes have to wash your clothes in your sink. This time, my Angel RN came to me to volunteer to do my laundry. Amen for meeting a need I had. A friend from home came to visit me today. Gladys lives in Chesapeake and came down to visit me. She called last week but I was so very sick and icky, I did not want any company at all. Today, her visit was awesome. We got to walk around the hospital and leave the floor. This was a big venture off the floor for me. We went to the cafeteria and had lunch together. We chatted and had good fellowship with each other. She left too soon, but then the drive home takes time. She is a kindred spirit and I appreciate her a whole bunch. My friend who works at Duke, Jennifer, calls me everyday and emails me as well. She comes to visit on her lunch break and we chat about her business ventures on the horizon and about her most darling little baby, Chloe. She is a little Doodlebug who charms everyone with her ear to ear smile. Jennifer found me when she was researching CF and a drug used in CF, called Colistin, and emailed me when she read that I attended the Duke CF clinic. We have kept up a friendship ever since. Her niece is Holly, and she has CF. What a joy it has been to count Jennifer as a friend. Her sister Vickie (Holly's mom) has "adopted" me as well. The circle of CF grows wider and wider. Most all of my friends have some connection to CF. Well it's shift change now and I have to have vitals done and inhale my med's Then I have 2x 30 minutes sessions of chest physio therapy before I eventually try to fall asleep. I hope I dream tonight and have a good sleep. Safe in the arms of Jesus. Love Lori XoO March 9 Today the floor was busy as almost everyone had their TV set tuned to the basketball game. The rivals of Duke, the Carolina Tar Heels were playing Florida for an ACC slot. Everyone one here is a Duke fan, but a few of us are rebels and yell for the Tar Heels. So I wore my Carolina blue Tar Heels PJ's and my Tar Heels t-shirt all day. I am feeling better. Not as sob and my sputum has changed, but it's not at it's best. We are seeing what grows but for now, it's my regular friends of 4+ gram negative rods (MRSA) and the B. cepacia won't show it's ugly colonies until round about day 10. By then I'll be home. The diarrhea is better but not gone. I am feeling strong but I notice I can't go very long without oxygen. I'll take the trach collar off and within 15 seconds, I am needing a blast of oxygen, which tells me I am not back to baseline yet. No fever, good appetite, looking forward to going home Tuesday. The one thing we are watching is my left lower leg. It is more puffy and swollen than ever. Usually Lasix takes care of this, but it has not. So I asked today for more Lasix on Saturday and Sunday, to see if it works. To be safe and to rule out any possibility of a clot in my leg, they did an ultrasound tonight. I'll know the results tomorrow when they round, but it is expected to be negative. But I don't like the way my legs are swollen. It is something I'll be watching. Maybe the Lasix will work and I'll pee of 2 liters of fluid. Then presto...I'm back to normal with no complaints. This is my prayer tonight. That the leg swelling resolves and it turns out to be nothing of consequence. More so as I have to return to work in a week and I am so looking forward to this. Please add this to your prayers tonight, will you? Much appreciated, Friend. My night nurse just came in at shift change and his name is Steve. I'm going to close here now so he can assess me and we can chat about old times in Canada, eh? Like he's a Canuck to, eh? Gotta go. Love Lori OOXXooXXo March 10 I had a good day today. Small low grade fever in the morning that vanished with Tylenol. Lungs sounding better and I am up walking the hospital halls for longer periods. The sun was out in full bloom and the weather warmed up. My friend Jennifer called and asked if I wanted a visit from her today with her little girl Chloe. Being a Saturday, she was at home with Chloe and needed to come to to hospital to do something so she brought her little one along. What a cutie. She has fat chubby cheeks and the cutest little lips. We hung out for a few hours then my bag of IV antibiotics went up at 3PM. I am feeling better. Less nasty sputum to report. My ankles are swollen but that goes along with my general complaints. Oh how I miss my cats. Something as simple as a cat can dramatically effect your attitude and I miss snuggling with Taylor and Puddy Cat. This evening, I received a phone call from my nephew Timothy. His in-laws live in nearby Raleigh and as he is in the neighborhood, he'd like to come visit me tomorrow. So amazing! A visitor from home. Family. I'll be so happy to see him. It's nearly 10PM and I have to close now and get the ventilator ready for tonight. I sleep with it attached to my trach and it rests my chest muscles overnight. Time to close this update. Please continue to pray for my health. With love, Lori XxxOOxo March 11
The nurses on the floor have been glued to the TV this weekend as rivals Duke and UNC have been playing for basketball bragging rights. I'm cheering for UNC to win. I have been wearing my UNC pjs and shirts and yell 'Go Heels' when someone yells for Duke to win. In the end, it's all just a game and I'm going home. Home to my waiting husband and kitties. Love Lori xOx Go Heels! March 11 One more day until I am going home. I am pleased I am feeling this well. I did not sleep last night. I was too wired awake, thinking about being at home in my own bed, surrounded by 2 cats on my chest. Our Sugar Gliders Randy and Andy, would be flying around our bedroom too. I've missed my routine. I've missed my Brian, Sweetheart. It is a brilliant day here in Durham, with the high temp today at 68 degrees. Oh how the sun shines brightly. It is welcoming me home. Tomorrow, Tuesday, Brian will come and get me. I am to be back at work next Tuesday, on call, so I have a week to be ready for this. Another wonderful exciting thing I look forward to--my job. Most people have a dream job. I am working mine. The triple lumen femoral line will be removed tomorrow. Cut a few sutures, band aid applied, and go home. A big major Thanks goes to the Duke Pulmonary Fellow who rounded on me everyday. He is very knowledgeable. He is from Singapore. His name is Dr. Ghee-Chee Phua. I'd hire him instantly. He listens to you and does not make you feel that your 'one minute with the doctor' is over--bye...gotta run. Nope. He let's you take your time. He listens. HIRE HIM DUKE. Or at least let him return to his country a smarter and more empathetic doctor. This guy is someone you want on your medical team. I just had a visit from Dr. Hargett, the Pulmonary Attending for this month. Again, how did I luck in with such a good supportive medical team this time? Again, I will rant and rave for him and hope I get him again on another admission. He is friendly and will sit in your bedside chair without thinking it has cooties in it, and will talk with you and answer your questions without feeling he has to rush out the door. Like for that few minutes, I am the ONLY concern he is thinking about. That's what we all wish for when we visit our doctors and health care members, right? It's true. I just had another visitor....the Nurse Manager of 7800, Kim Osborne. We had a wonderful discussion about how my tune up went this time and also about what have I decided when we come to the dying part of CF and how which heroics I might want done. It was a wonderful discussion about my end of life wishes and how Brian is scared about my death. We talked at length about what I'd want done and I gave her a copy of my Living Will, which is a notarized document outlining under what circumstances I'd like to be resuscitated and when I'd like to be sedated so I can go home to be with Jesus. We will talk more down the road. OK...going to walk around a bit as the sun is calling. It's too wonderful outside to lay cooped up inside when I have walking legs and am yearning to go. A student in the Physician Assistant program here at Duke is coming to interview me at 4:30. Ask me tons of questions and learn more about Cystic Fibrosis in adults. It used to be we died off very early in life, but with more research dollars and better medicines and treatments, the median survival rate in the US has crept up to age 32. So when you come across an oldie like I am, age 43, I might be the only adult CFer you come across. So learn from me and take what you garner from the interview with your forever. To be sure, there are older people than I with CF living and breathing in the US. Hal Soloff is one such hero. He is 75 years young! Go Hal. Love Lori xOOOxXooXOOOOoxoo March 25 I have continued to thrive at home and feel well. The only thing I have noticed is more shortness of breath. Doing little things that I could do a month ago, now cause me to become more SOB. I have noticed this change and now have to sometimes pass on doing something as simple as carrying in a bag of grocery's into the house because I know I'll be huffing and puffing for 5 minutes to re-coop my air. This is new for me. Oh well....adjust and keep breathing. I was on call 3 days last week at work but I did not have any cases. This means of those who died in Chesapeake, none were Medical Examiner cases. They were natural deaths not requiring the ME to be present. SO I have a very quiet 3 days waiting for the cases to come in. None did. I'm back on call for another 3 days this coming week, so maybe my luck will change. Throw me a case (or two) and I can work at the job I love. Waiting patiently... We had an awesome day at church today and what a gorgeous sunshiny day it was. It is in full Spring around here and my gardens are growing and the birds are nesting. Our resident momma bird has returned to her nest and brought 3 new babies with her this year. I saw her and the little ones a few days ago. They have nested in the huge pineapple lamp at our front door. THis is the second year she has returned to her old nest to birth her youngins. They say she will return each year to the same nest. She builds it up and we saw her husband last week bringing material for the nest too. They both have made it a comfy pad for the whole family, apparently. Another wonder of God. As I mentioned, I have felt well. That last CF tune up at Duke brought me back to feeling like 'Lori' again. Amen and Thank You for your prayers. Also, I met with the Hill-Rom rep lat week. These are the people who make The Vest. Readers of my web page know The Vest is the machine I use daily to wak n' hak to crud out of my lungs. Now that have come up with a bag on wheels so it is much easier to pull your Vest around with you now. It's a big blue duffle bag with in-line wheels and it is beautiful! It fills a need so perfectly so now I don't have to schlep that heavy machine over my shoulder and carry it. Just zip it up and go. Another great invention from The Vest people to make living with CF a bit easier. Thanks Caroline Jones! April 18 Today is our 9th Wedding Anniversary! Wow how time flies when life feels "normal". I haven't updated all my anxious blog fans for 3 weeks, and have received email asking if I were dead or alive. Turns out I have been busy. Something feeling well allows you to be, on occasion. My last CF tune up at Duke ended March 11th and I have reaped the benefits of a good whack of IV antibiotics. See, sometimes that poison really does work. Go figure. So I've been doing well, Amen. I think I can credit this to my new full time job. "What new job?", you ask. My job of taking utmost care of my CF and giving in to its demands. I have worked hard to keep up with the Vest schedule, do my nebs, being careful to inhale all the medicine, and get more sleep. I think it is paying off. I have felt better for longer. I'll take happiness however it comes to me. But then again, with Spring comes eternal optimism, right? A chance to renew ones Spirit and see new baby creatures fly into a waiting world. Today is our 9th Wedding Anniversary! Yeah. Brian and I have stuck it out for 9 nears. We pray for another 9, as easy as these ones were. We enjoyed Easter Sunday with the Price Family and had a wicked N'orEaster storm blow through here. Right now, Brian and I are packing for a 2 week vacation to Toronto and I have much yet to do and time is a flitin'. My large family in Ontario awaits our visit with open arms. Brian and I will be so thrilled to be back at my stomping grounds. A trip to Niagara Falls will be awesome as we did that when we were dating. I let Duke know we are going and they wished us well. "Stay well!", they said. My sister Dolly is hosting a family party and it will so wonderful to be back with everyone who loves us. I am so very happy and excited we are doing this together. Speaking of being happy, tomorrow, is Brian's birthday! Another reason to celebrate. Happy Birthday Brian, my Sweetheart! Let me close here by saying I am blessed to be doing well and appreciate prayer partners who make this their request. Thank You. All is going well right now is our lives and despite some of the doom and gloom that Duke pronounced during my last tune up, together, Brian and I are making the most of every day and living life to the max! Make every day count for God. Lean on Him. When the days look tough and you need to put your weary body in a big lazy boy chair to rest, know that The Lord will give you that second wind you need to recoup. Learn to Trust Him more. The Lord is waiting to hear from you everyday. Imagine, waiting just to hear you ask for Him. Knock and talk. He's waiting, and listening. With much Love, Lori xxOOxx....9 years of Bliss. Thank You Jesus! April 25 Welcome to Canada! Brian and I are at Sister #1's house just outside of Niagara Falls, Ontario. We arrived yesterday about 5PM after a long drive from Bedford PA and had a great time driving here. We left Chesapeake Sunday morning and drove until 5:30PM when we arrived at Friendship Village RV Park in Bedford, PA. It was like a ghost town. Vacant and eerie. It is the off season now, so the RV park was nearly vacant, and rarely did we see other people. Still, we slept for the night, enjoyed the next day as a relaxing break, then drove out of there early Tuesday AM. The Allegheny Mountains in PA were awesome! We drove our RV up to an elevation of 3000 feet and looked down into the village below and it was so beautiful! The hills were so very steep and forever they roll up and down. In fact, a cupboard door popped open and one plate and bowl shattered when they fell. I've learned that in an RV, expect EVERYTHING to fall. Nothing stays inside the closed cupboard. Everything eventually falls, rolls or jumps out onto the floor. At least the milk didn't spill. Tomorrow, we have plans to tour Niagara Falls and the local tourist spots. Today is raining, so we stayed home. And it is good as I need to rest. We all went to Swiss Chalet last night and had a wonderful dinner there. I love Swiss Chalet. Sadly, we don't have any in the South, so I have to come home to Canada to get a taste of it. Today, we are resting up. Brian is listening to his radio and has been interneting for hours now. My sister is preparing an awesome down home roast beef dinner with all the fixings and we are so thrilled to be here with family. OK friends.....don't know when we will have an internet connection so I will update things as I can. We are well, I am pink, breathing kinda OK for me, and are grateful to have arrived these 780 miles without incident. Amen! Love from Lori May 5 We are home! Home Sweet Home. What a wonderful time we had on our journey to visit my family. We are so very exhausted that this is all I'll update you on now until I get the stuff unpacked and my life back in order. I have tons of mail and bills to go through, so when I am settled and have time, I'll write more. We are safe, Amen, and everything was awesome! Love Lori and sick in bed Brian, down with the flu and a cold, feeling miserable and coping with a fever. May 16 Things are back to normal for us now, but our 2 week, 1850 mile adventure, sure walloped us good. Brian was unusually sick. Some days, he couldn't even drive the RV, he was that nauseated. When we got home, we went to the doctor and Brian had pneumonia! My healthy Brian really was sick. A dose of antibiotics, rest, and Tylenol for his fever worked, and after missing a whole week of work, he was better. Then he passed his germs along to me. I don't think I was hit as hard as he was, but then again, I am always on an antibiotic cocktail, so I might have had some protection. My fever was 102 and I just sweated it out in bed and slept a whole lot. I'll bet you might never have had a point in your life where you wanted to stop breathing because you were so miserable, right? Well I was at that point. I wanted to be dead, just for a few hours, until the misery passed. I wanted to breathe normally, not having to listen to my hacking coughs and rasping wheezes. I just wanted to die for a few hours and make it all go away. That didn't happen (Amen!), but 3 Benedryl pills did knock me out for a few hours and allowed much needed sleep. Amen that our sickness came at the end of our vacation, and did not really ruin it. We spent a few days in the Niagara Falls area with sister #1, Noreen and her husband Gordon. We went to the Falls and took a horse and carriage ride for an hour. Everything was wonderful. Then the thunderstorms came. We were drenched and hit a Wendy's to eat and waste time. What fun we had. I even fed gaggles of Canadian geese. With my oxygen tank in tow, we went everywhere. When we crossed the border into Canada, Immigration there was so very paranoid that we might be carrying guns with us. They didn't ask about anything else except did we have guns in the RV? That was the only question we were asked. Nothing about food, plants or money, but GUNS. Now, coming home, the only thing the American Immigration folks cared about was MEAT. They searched our RV all over and confiscated all our meat. Our pepperoni sticks, Slim Jim sticks, deli meats, hot dogs, everything. They never once asked us about guns. Just MEAT. And they took it all. They had to incinerate it pronto. I asked if I could eat it before they took it. Nope. Incinerator right away, or turn back around, go back into Canada, and eat it there. Yeah....right. So that was our experience with Border control. After Niagara Falls, we drove the RV to sister #4s house (Dolly) and parked in her driveway. We rented a car and drove all around Toronto. We had a wonderful time, although Brian was scared off of driving in downtown Toronto. It is a nightmare and so congested with never ending road work, and you can't be a wussie driving downtown. I had a ball! I even had a visit with my birth mother. I was adopted at age 2.5 years old, so I met up with my birth mother and had a very nice visit. Turns out she loves Disney as much as I do. Brian and I met many friends in Toronto and did lots of eating out. One night 6 of us were at dinner at Marche. What a wonderful time to reconnect with friends in Toronto. My sisters also planned a Grand Gathering in Toronto and almost everyone was there to celebrate. Dolly hosted a gathering at her house and my nieces, nephews, sisters and grand nieces were there. Our family is growing with new little ones being born. It was nice Nancy (sister #3) and Nathan came to see us too. Only Vicki (#5), who lives 3000 away, was not there. We wished she was with us. I went to visit the grave of my parents. Now with its headstone finished, I saw where my parents rest side by side. It is where I will be sprinkled when I am cremated and returned home. Home. Back to my Canadian roots. It is so important to stay connected with family. I hugged them all a little harder, kissed them all a bit more tenderly, and told them I loved them all a little more earnestly, thinking this could the last time they see me alive. There was happiness that Brian and I were there, but also it was more of a last trip home for me. A chance to see my sisters while I am still alive. Everyone knows I am on borrowed time. My sister Brenda and I had a few tender moments when I told her I am tired of fighting this monster called Cystic Fibrosis. That some times, I wish the pain would go away and I'd be in Heaven. And that I'm ready any time the Lord calls me home. Sometimes the fight makes you weary. Then a smile, or laughter makes you glad you are alive again. Still, I cried when we talked about me dying. Having sisters makes that so precious. Anyhow, we survived our RV trek through the Allegheny mountains in Pennsylvania, and had an awesome time. I'd do it again if we could manage it. Anything to have more time with my family. Family is so precious. Thank you for being there for me. For us. For Brian and I. Thank you for welcoming us and sharing your homes with us. Thank you for loving me, your littlest sister. Now, it's back to living. Back to life. Back to wishing for another tomorrow and for thanking God for another today. What a wonderful journey we had, made better because of the safety we experienced and because we had family waiting for us on the other end. Love your sister Lori XoOXXOooo May 24 Nothing dramatic since my last entry. I am on the edge of going to Duke soon for another tune up. It's coming... and I'm trying to hold off until early June. My lungs are beginning to act up and it's time to go in. As I thought about it today, I felt such peace. Peace that this would be a good tune up and that they would find my lone femoral vein. I was not fearful, so I think it's the right thing to do to go down to Duke. I felt the Lords peace and calm, still my heart and tell me not to worry. So that's God's sign He will make the vein issue work for the best and I have to trust HIM to make it happen. I went to Chesapeake Jubilee last weekend with friends. It's a big carnival with rides, midway games and food. I pulled my oxygen along with me and we had a fun time. We heard the "Temptations" sing. We might have been the few white people in the audience. Everyone was black and re-living the Mo town era. I had a blast! This is my short and sweet update, just to let you know I am still alive and fighting! Pray for me, please. Love Lori XxooO May 30 I have spoken with the CF clinic nurse and they are hoping they have a bed to admit me to tomorrow. I'm cool with that as I asked to b My sister Noreen called today and she prayed with me about this admission tomorrow. A lot is at stake here with having only one vein left to hit for IV access. So friends, my request of you would be that you ask the Lord to guide the doctors as they attempt to cannulate my femoral vein, and that they get it with minimal pain on my part. I feel peaceful with this prayer request and have felt comfort that they will get it OK. Much is on the line here, but I am trusting My Lord to make it happen. Amen! We are not yet ready to open our pool as we are having some work done in the backyard. Most people use Memorial Day as the first opening day, but we will just have to trot along and do it when we have things all ready. On Memorial Day, it was 88 degrees here, and whew! Did I wish I could plunge into a cold pool right then. I have been on call a lot for the month of May but have not had many cases. Now that we are rolling over into June tomorrow, I am free to go to Duke as I did not commit to working the month of June. My tune ups usually last 16 days then I return home, recoup for another 1-2 weeks, then try to make an effort to return to work after that. So far, it is working. Our little family of 3 sugar gliders bring us much joy at night as they bounce around the bedroom. Randy loves to stalk and chase Chip, picking on him always. His brother, named Dip, is a cute little thing too. They can be annoying when, at 3 AM, they want to play in your hair and nibble on your scalp. Their official name has not been determined, but I have taken to calling the 2 brothers Chip & Dip. Works for me. OK family and friends....I'll close here and head to bed soon. The sugar gliders will come out of their cages about 11 PM and play. I am ready for tomorrow. To go to Duke and them treat my CF aggressively so I will come home feeling better. Prayers always requested and welcomed. With Love, Lori XXooxoXxo May 31 Well, here I am, in room 7814 at Duke University Medical Center. The Pulmonary floor seems quiet. I received a call from the CF clinic nurse today saying they had a bed ready and to come on down. It's a 4 hour drive and Brian had no difficulty taking time off work to drive me. His boss at the PBS affiliate in Norfolk, WHRO, is quite kind to Brian when it comes to my medical adventures. They allow him to go when unexpected emergencies come up and don't threaten him with a job demotion or anything else, for these frequent occurrences. A wonderful employer, in my books! Thanks John Heimeral. Brian stayed long enough to see me settled in then made the return trip home alone. He left at 8PM. I was assessed by an intern and then a Pulmonary Fellow, and they came into my room with the portable ultrasound machine and a sterile triple lumen IV line kit. My night nurse is Allison. She told me jokes to distract me while the other folks tried to thread that long catheter into my groin and up 2 feet. Won't budge. Seems there are adhesions that prevent the catheter from tunneling up. They tried so hard to get it passed but we were stuck. They decided not to keep pushing but to try tomorrow. They opined that a fresh set of eyes and a new approach might do the trick. I asked them to tell the doc on morning rounds that I really did my best and I didn't give up, but they thought 6 attempts were heroic and plenty enough pain for tonight. When I got to the floor, some nurses were shocked to see my face so swollen. The itching makes me want to chop off my fingers, it is that bad. I scratch so deeply that I bleed and that is an endless circle of infection and frustration. Calamine lotion doesn't stop the rash and my face is very bloated and super sized. I just called Brian, who was just 25 minutes from arriving home, and he was encouraged that someone else would try in the morning to get this darn IV started and that we would get into that elusive femoral vein. Please keep me in your prayers that they would get the IV line in for the antibiotic cocktail, so my nasty sputum will clear up. Bedtime for Lori. June 1 After the trouble last night trying to find my vein, I was hopeful a new team and a different of eyes would get the job done. Dr. Kussin rounded on me this morning and offered his opinion. He wanted the Pulmonary Fellow to try again. I had to say OK as this is what I wanted too. I need this IV access so anyway we can attempt it, I have to agree. Try as he did, it was a no go. The darn thing would not thread up my femoral vein. It was getting hung up on scar tissue. This was the 10th attempt at putting in a femoral line, so by now, there certainly is scar tissue and it's difficult. So Dr. Kussin came back and said the Interventional Radiologists owe him a favor and even though it's a Friday afternoon, it's still a full day of business at Duke. Dr. Kussin asked for a favor and he got it! Soon, I'll be going down to the Interventional Radiology OR suite to have them try yet again to get in the IV line in. This time, they will sedate me and will use ultrasound imaging to "see" the blockage. It is hopeful I'll get a new triple lumen right femoral line. If they CAN'T get it, then I don't know what happens next. We haven't discussed it. But during my last admission, we had the heart to heart talk about end of life issues and how far I wanted to go. ALL THE WAY, BABY! Until I say stop. When I've had enough and living and breathing is too great a burden, then going home to Jesus is the next great adventure waiting for me. I called Brian and told him the news. When they come to get me to go to the Radiology Suite, it will be another surprise to see where I end up with an IV line inside of me. OK Family and friends, I'll say good bye here and try to write tomorrow, if I feel like it. Right now, your prayers would be welcomed, for the Lord to show the doctors where they need to go to hit the vein. Time to go. Love to you all, Your sister Lori oXXoooXXXxxxxOOOO Later that Night... The nursing shift has changed and I am pleased to see that my favorite nurse, Crystal, is assigned to me tonight. My night won't be that bad with Crystal on my case. My left thigh has a red, angry mystery rash on it. I thought it was the batch of ?poison ivy? I got into 10 days ago. My fingers all swoll up with red itchy blisters all over. Today, they used the ultrasound machine to look at the rash area and saw a pocket of fluid, about 2 inches x 1 inch, fluid filled. So at about 6PM, they came to stick a needle into the fluid pocket and send it to the lab. No Go! Despite lots of local anesthetic around the rash, they could not get the bigger needle to aspirate the fluid. After about 11 tries, they gave in and said they would try again tomorrow. Perhaps the antibiotics I'm just beginning now, will shrink the fluid pocket. We'll see what happens. Dr. Hargett said there is a new antibiotic used in CF and he'd like to see if I can be granted permission to use it. It is tightly controlled by the ID folks (Infectious Disease) and when they say YES, it is released to the patient. He said he has used this new CF antibiotic on 1 other person with CF, down the hall from me and had very encouraging results. He said that person was on it for 2 weeks, but as I am sicker this time, he would like me on a 4 week course. I said that would be great IF it means I can stay out of Duke a bit longer. So hopefully the ID folks will come by tomorrow (Saturday) and sign off on this new drug and I can begin working with it. My IV line is sewn into my right groin and it is not causing me any pain. Some discomfort, yes. Pain? NO. Getting ready for bed soon. The RT has brought in all my nebs to inhale and I still have an hour long Vest Thairapy session to do then I can fall asleep. Thanks to my sisters Noreen, Dolly & Brenda who called me today and offered to pray and encouraged me. I benefited from that. OK, night time. Love Lori xxOxoooo PS: I am dreaming of Swiss Chalet, half chicken, white dinner with fries and dipping sauce, right now. MMMMMMMMM June 2 I slept well last night and I needed the rest. Already my swollen face is a whole bunch better. Much less swelling, and my eyes are no longer swollen shut. Major answer to prayers. Thank You. The rash on my hands and left thigh puzzles them. Dermatology will come sometime and perhaps biopsy the thigh by taking a skin scraping. The doctors tried to aspirate fluid from the left thigh pocket yesterday but after many attempts, nothing. It was painful with each needle poke, but I wanted them to get a specimen so they could diagnose it. My white blood count likes the new antibiotic. When I came in, my WBC was 15,500. Now, after 3 doses of IV Tygacil (tigecycline) and 8 doses of IV Zosyn, that level is now 8,000. Amen it is working! Brian is keeping the house running and misses me already. It's very quiet here on this floor because it's the weekend. Time for a nap now because I am itching way too much and am tired from the Benedryl. Will write more later. With Love, Lori. June 3 This is the day that the Lord hath made. We will rejoice and be glad in it. It is a very rainy Sunday and the sky is gray. It's very quiet here on the floor. No tests, no ORs, so the weekend tends to be quiet. The dermatologist came in at 0815 this morning and looked at my "rashes". She opined that it could be scabies, bed bug bites, shingles or a hepatitis rash. I didn't like any of those guesses. She left and brought back the department head and together, they decided to treat it as though it is Poison Ivy, as their best guess. The itching is constant, with little fluid filled blisters, so painful that at times, I could have chopped off my own fingers just to get relief from the severe itching. They have upped the Prednisone and added a steroid cream (Triamcinolone creme) to slop all over my skin. Plus they added an anti itch pill every six hours and also Calamine lotion. Pharmacy compounded a home brewed cocktail of virgin olive oil mixed with citrus lime water that acts as a drying agent. I'll make a paste of it and slather it over the red rashy areas. Hmmm. The Pulmonary team came by and said I am holding my own and there is nothing to do except let these IV med's run in. Our neighbors, Ruby & Rudy, called Brian to invite him over for a good, Southern Sunday dinner with them today. Brian went and enjoyed their company and good food. He called me when he arrived home and said Ruby even gave him carry out leftovers to hold him for a few days. Wonderful people and great neighbors. Thanks Ruby & Rudy. Now my Brian won't starve for the time I am gone. I am feeling a bit better from a CF point of view and welcome this. Oddly, my blood cultures came back positive for Staph. Funny as I don't feel septic or bacteremic at all. No fever either. Hmmmm....could be a contaminant. My left thigh is nearly back to normal although remains of a rash exist, but the pocket of fluid is very small. My CF pal Lori Jernigan is also in the hospital for a CF tune up---in Boston. She moved from Duke to Boston so she goes there now and really likes the doctors and transplant team there in Bean town. We are both in now for tune ups and email each other daily. I am ready for bed now and suspect I'll sleep better tonight as I am very tired. Much love to you all who read of my adventures and to my family, especially. Love Lori. June 4 Nothing much this day to report. The Pulmonary team just came and rounded on me and it's a "just wait and see" holding pattern I'm in right now. Continue all the med's and treatments I am doing and things will improve. It is more likely I'll just do a 15 day stay and not a month, as was talked about. Works fine for me. I slept most of the day and itched all day. My ?Poison Ivy? situation is getting better, but my skin looks nasty with little red blisters that looks like bug bites. I itch non-stop. Brian called a few times to say he misses me, and Gladys, a neighbor called today. I received an email from a lady I was in Pulmonary Rehab with over a year ago named Mary. She was there at Rehab with her sister, while waiting for lungs, which she later received at Duke. Mary moved back home and has lived with the challenges of the new way life changes after transplant and is holding on. It was wonderful to hear from her and to know she is praying for me. Thanks Mary Harrill. Brian will come to Duke this weekend and stay at the local hotel. He likes to have this kind of "Mini vacation" where he gets treated as a guest and has a good, Sunday morning breakfast buffet at the hotel. We have a pet sitter who comes in to take over when we can't be at home for food and insulin shots. Time to crawl back into bed as it's 4:34 AM and I need some REM sleep. Gotta go! Love Lori OxxoOXo June 6 It's 5AM Thursday and I am awake and back to the Land of the Living. I had a good sleep last night and now I feel as though I am caught upwith renewed energy. Just brushed my teeth and put on more anti itch cremes and lotions. I am still annoyingly itchy, but not a 10 out of 10 like a few days ago, probably more like a 7 out of 10. Overall though, I am doing better and healing. Amen! Yesterday Dr. Kussin came by and we chatted. He asked if I had changed my web page yet? "Nope. I need some digital pics of you," I said. "When Brian brings in my digital camera, I'll let you know so I can take some photos of you and post them on my web". He agreed. He said I should take down the 'No Lungs for Lori' approach and instead, hype the Duke CF clinic and why we drive 200 miles one way, to come here for their CF expertise. So I'll do what I can to work with what I've got. Hmmm.... We also agreed that for my next tune up, we will skip the pecking order of who gets to try to put a central IV access in me and instead, just go back to the Interventional Radiologist and ask him to put in my line surgically under guided fluoroscopy. As he can "see" everything using this machine and not go in blindly, it is better for the patient. This time around, I already had endured 7 attempts to get a line sewn in, to no avail. If we can stop that from happening again, then I'm a happy camper, no? Brian will come visit this weekend. His room is booked and he is looking forward to seeing me again, as I am him too! Now if he could just smuggle in Puddy Cat and Randy the Rat, I'd be the happiest patient ever! Just means I'll have to use my "Get Out of Jail card Free" next time. The sun is up now, and my room is suffused in a radiant glow of sunrise yellow. Thank you Jesus for this day! I had my favorite nurse again last night, named Crystal. I am feeling a tab bit better and have more energy, although I still have an afternoon nap to recharge. My sputum results show the same bugs I always carry around with me, so it's nothing new and I am on the right antibiotics for it. My cepacia bugs really stink. Today we will plot my discharge date and work towards that day. I am thinking it might be Sunday June 17, at least that is the day I will bring up today as I will have finished a complete 16 day course of IV antibiotics on that day and will be ready to go home. OK...it's show time. Time to get ready for a knock on the door announcing morning rounds. Gotta go now and put some socks on cuz my toes are cold. Chat again soon, Lord willing. With Love, Lori xOoXooo June 8 Brian just called and he has solved the mystery! He has identified the rash. It is Poison Oak. I told him where I was digging and what I did in the front yard of our house and he went back to collect some samples. A check with Google and with people at his office confirmed what we didn't know...I was playing with Poison Oak! YIKES and Goodness Gracious Me! Then I went to the web to fact check the findings and I have come to believe him 99.45%. I was playing with fire! The good news is the blisters will slowly recede and I will feel better. No permanent damage will evolve and I have learned a lesson from this: "When in leaves of three, tis best not to mess with thee". Poison Oak leaves are used as ground covering and are called a Virginia creeper plant. The plant likes to crawl UP the trunk of trees to grow, which is odd. When you see 3 leaves on a stem, leave them alone! Once again, I am blessed with having nurse Crystal overlooking my care tonight. Bed time now for me as I close here and wish you pleasant sleep. Dream deeply and enjoy a good night of rest. Love Lori. June 10 It is Sunday, late afternoon and all is quiet here at Duke. Brian visited me for the weekend and is now back home in Virginia. It's a 4 hour drive and 202 miles each way. We had a wonderful visit and some precious cuddle time together. Brian brings me all the mail from home, in a big brown paper bag and lets me write the checks and pay the bills. He stays at a hotel very close to Duke and they have a shuttle bus to take him around. It works out well for us. On rounds, the question being asked is how long should I stay here for this tune up? With this new IV medicine called Tigecillian, Dr. Hargett suggested 4 weeks would be ideal. Yesterday on rounds, Dr. Marshall suggested 3 weeks. I butted in and said the longer the better as I am doing well on this new med and by hitting me up hard with it, I might be able to buy more well time on the outside. And since it is so darn difficult to get a vein, while the going is good now, perhaps they ought to go as long as they can. The benchmark might be when, or if ever my femoral line becomes infected, if it comes out, or at 4 weeks of getting the med. Now, the decision rests with my admitting physician, Dr. Kussin. I'll probably see him tomorrow and we will discuss this. My choice is to stay the longest possible to get the greatest effect. Another good reason for this is right now, I CAN take the time off work to do it. No commitments on my schedule tie me up right now so this would be a good time to stay put. We'll see....... My right arm, both hands, and whole trunk still have blistered welts from the poison oak. It looks like flea bites all over my body. I am certain I will have scarring where these blisters have scabbed over. Now that I know we have poison oak on our property, I will be very careful. I am ready for bed now. I'm tired and want to sleep. Until another day, Love Lori xOOoxoXox June 11 It's early Monday morning and I just woke from sleep. We had a nasty thunderstorm tear through here last night and it's too dark outside to see any damage. I think our plants and grass needed the water, so we got dumped on. No complaints here. Brian had a good visit here with me even though I slept through most of Saturday without him. I was dead tired and slept it off. Later, we walked around the hospital and saw the helipad with their rescue helicopter ready to go. It's high up on the ninth floor roof of the main hospital. Sadly, Brian's visit here came to an end too quickly and he had to drive off for Chesapeake. He made arrangements to return to the hotel next weekend for the same thing, more time with me. I am feeling better, Amen! Today is day 11 of this IV cocktail which is making me feel better. It's day 12 since being admitted. The Dietary Aid, named Barbara, is taking good care of me and has me under her wing. She brings me a few packs of cheddar cheese and crackers for a snack eac June 13 Last night I was too restless to sleep. Why? I miss my dear Brian. And the cats, and the rats. Well, the flying rats as I call them, but they are really Sugar Gliders. Little Miss Taylor Girl is missing her "alone time" with me where we snuggle together on the bed. When I call the house and leave a voice message, Puddy Cat looks all over for me. She hears my voice but can't find me. Last night I watched some tv and read, then got on the internet and surfed. I miss being at home. I miss my dear Brian. In good news, I am going home on Sunday. Just 4 more days and I'll be home. Sunday, which is Father's Day, is my discharge date. That will make this stay an 18 day visit. Wow. 18 days feeling yucky. This new antibiotic, Tigecillan has worked well for me. Combine it with IV Zosyn and it was not too bad on my body. Constant diarrhea always happens with multiple IV med's and it wasn't too bad this time around on this cocktail. My sputum has not yet given up its Burkholderia cepacia bugs. I know by the smell and taste that I am heavily infected with cepacia, yet the micro lab reports they have not cultured it so far. Well let me tell you that Brian is my real cepacia barometer and he could taste it on my lips when we kissed, so there. Not wanting to be content that the micro lab reporting they can't find it (B. cepacia), I donated another glob of sputi to the lab for the CF Micro Studies and now it is cooking in their labs oven. I just want them to come back and validate that this time, the B. cepacia is there in large (measurable) colonies and that it did push me over the edge where I needed to come in for IV's. Regardless, I am feeling better... but my sputum is still horrible and stenchful. It's a dreary day here in Durham and drizzling lightly. I hope to sleep better tonight as I am tired but don't want to have an afternoon nap and spoil it. I am excited about going home! OK...time to close here and say fare well until another day. Thanks Jennifer Caldwell for coming to visit me! Much love, Lori xOoXoooooooxxxxxxxxxxxxxxxx June 14 Another overcast day here in Durham. Looks as though the rain is coming later today. I miss being at home with Brian. I will be very grateful to be discharged Sunday so we can be back together and on our way home to Virginia. I wish I were more cheery and happy now, yet I feel tired and beaten up. My sleep schedule is way off queue and what I really need is a long night of sleep without any interruptions for vital signs at midnight and again at 7AM, followed by IV infusions being hung every 6 hours. All these necessary interruptions destroy my sense of sleep. Oh how I just want to have uninterrupted, deep sleep for 2 days straight. My sputum is nasty as ever and it stinks. Little change from 2 weeks ago. Go figure that one out. I have done well on the IV cocktail of Zosyn and Tigecillan but still I am wiped out. I had hoped my sputum would be better than it is, so I would have a sense of accomplishment, yet I am worried I won't get a long respite out of here because I am not being sent home in as good a condition as I ought to be in. I need to stay well for at least 9 weeks because my femoral vein needs time to heal before another jab at it. When Dr. Kussin comes to see me today, we will talk about this. Should I be going home? I also am a bakery at this moment. What do I mean by that? Well I have so much yeast, you would think I was a bakery. The antibiotics have messed with my "normal" flora and have over run my gut and buttocks with yeast. My solution is to have a long, soothing bath at home. Their solution is to stick vaginal suppositories where the sun don't shine, to fix it. I'll try the bath first. More later as I need to rest for a little now. With Love, Lori. June 15 I slept poorly last night. I think I am just too wired up about going home, so it's hard to relax. That will change when I am home. My sister Brenda called me yesterday and it was wonderful to hear from her. She is off to China in 2 weeks working on an ESL project. My sister Noreen is in Scotland for 4 weeks too. I am to be in St. Louis, MO the last week of July for a Death Investigators course. I am riding a wave of having planned to go from this tune up so I will be well while there. I need to grab 40 lecture hours as part of my CME (Continuing Medical Education) requirements to keep my license in good standing. Yesterday, I had a knock on the door and I did not recognize the visitor. She came in... and then it hit me!.. It was Mary Harrill from Duke Pulmonary Rehab! She looked so good and so healthy, I was surprised. Mary had a double lung transplant here at Duke 15 months ago and was at clinic today and knew I was an inpatient here so she came to visit. She reads this web blog and keeps in the "Lori Loop", and she prays for me too. When we were in rehab together, her sister (from way out west) came to Duke to be her support system and has been through thick and thin with Mary. She really looks great! And healthy. She was on nasal oxygen when I last saw her and now she is feeling so much better. But I have to tell you that her recovery was not easy. Many issues and problems along the way threatened her new lungs so please don't think it is a piece of cake, going through a double lung transplant. Thank you Mary for coming to see me and to share your faith with me. Amen! Today my friend who works here at Duke came for a visit. Jennifer came to see me and brought me a cute photo of her 7 month old Doodlebug baby girl named Chloe. She really makes great looking offspring. We shared our eBay stories and then she had to be elsewhere and left. It is always a joy when Jennifer comes to visit me. A big HUG of thanks goes to Nurse Administrator Kim Osborne who once again, volunteered to take home my laundry twice and brought everything back clean and folded. It's a small thing to do but oh what love it carries with it when someone will do your laundry for you. Thank you Kim for doing this again for me. Having clean undies is so important. Tomorrow is Saturday and Brian will come to Duke. He will sleep at the hotel nearby and come take me home Sunday. First, I have to have this femoral line pulled from my crotch. Un snip the sutures and pull. OUCH! 10 minutes of direct pressure over the groin region and then I'm good to go. My housekeeper called today to say she is preparing the house for my arrival and she says that I have lots of mail to catch up on. I am so ready to sink into my TempurPedic bed and sleep. Bring it on. Well I'll close here and go walk a few laps around the hallways. 15 laps = 1 mile. Gotta get walking. With Love, Lori 0Xx00X June 19 I'm home. Amen and thanks for your prayers. I was discharged yesterday, Sunday, and Brian drove me home. I slept most of the way home and then crawled onto bed when I could. Now I have so much to catch up on that there is no rest for the weary. Bills to pay, bank accounts to balance, phone calls to make and kitties to hug, plus more! I am glad to be home but I think my time out won't last 9 weeks. Why? My sputum is still so vile and nasty. Worse now than when I went in. Hmmmm..... More in a few days as my strength returns. Thanks for your prayers! Love Lori xxooOOXoxoxXX June 22 I am still trying to feel better and back to myself. It's taking a while to snap back into feeling like Lori again. I am still tired and don't yet feel the best I can be. I have no concerns about the Poison Oak scare. My face is 100% back to normal and all I have are some pox marks on my arms, belly and legs from the scabs for the poison oak. No more itching or blistering skin. I spoke with my Landscaper about this poison patch and he said he knew we have patches of poison oak, ivy and sumac on our property. He has his team spray it down every so often when he sees it getting out of control, so he knows we have it but he was not aware of the patch I got into. It was not in a place they had sprayed before, so now they will hit it up when they spray again. He saw the photo about how swollen I was and called me to apologize. So even I learned a good lesson from this and will wear gloves when I go play in the grass again. My sister Noreen called from Scotland yesterday and we chatted for 20 minutes. She is having a wonderful visit with her in laws and will be there about 4 weeks. We are going on a cruise together in October with her. I am hopeful I begin to feel better as I have an important conference to attend in July in St. Louis. Lectures are 8AM until 4 every day for a week, so I have to feel great to make it worth it. I am not going to work too hard in July to save my strength for St. Louis. I am praying I make it and don't end up back in Duke instead. It would be a disappointment, but CF calls the shots. I am so not happy about having another femoral line sewn into my crotch and the prospect of having this makes me not want to go back for another tune up. Yet to be in the land of the living, I have to fight CF. When it's time to die, God will make that decision for me. Until then, fight the germs and go along with the program. My friend Shannon is being admitted to Duke on Sunday for her CF concerns. I just got out last Sunday and we missed each other by a week. We sometimes try to coordinate our tune ups so we can be company for each other. Shannon loves to order in shrimp and we share our misery together when we are both at Duke on the Pulmonary floor sick. This time, she is on her own. You know I'm praying for you Girl! Our office has had to send a Medical Examiner to Roanoke to help them out until they hire and train a new ME and so we had to send Dr. Kinnison. I miss her. It is only supposed to be for 3 months, kinda like a loan, and I hope she comes back home to us as promised. She makes our office go round and without Dr. Kinnison there, we all miss her. Please come back soon, Libby. We need you in Norfolk. In other news, our diabetic cat Taylor, has gained half a pound but still has too high blood sugars. So she now gets 2.5 cc of cat insulin twice a day. She does not seem to be that better, yet she is a tad bit better and at least she is not losing weight. Our vet remains optimistic she is slowly adjusting and not in pain or suffering. She just turned 13 and I love my night time cuddle time with her. Our pets are our sanity as we do not have children. Childless by choice, we spend time and love on 4 legged pets and treat them as our surrogate children. Hey, they are cheaper than sending a kid to Yale for a year! Hello to my internet buddy Sheila Evans from Vancouver, B.C. A faithful reader of this journal, she is related to my friend Wade, whom I have written about on this site and who died from CF. Wades' wife was Debbie, who also had CF, and she also died after a life spent fighting CF. Sheila keeps up with me as she can and encourages me. Thank You Sheila, my Canadian friend. July 3 Hello All. It's been 11 days since I last wrote but I have been either sleeping or busy. I have been sleeping later these days as I am tired. My body needs time to rest and heal. Although that's ironic, because when I'm dead, I'll be getting all the rest I need. Permanently. So I ought to be more active now and fighting off the death ghoulies while I am still in the land of the living, right? Anyhow, I'm sleeping in later these days as my body needs it. I have low grade CF nasties doing their work and I am on the fence now about making a tune up decision: Either I use the revolving door and go back in for another tune up now, or hang on and wait until another 4 weeks, when I have returned from St. Louis. Recall, I am going to St. Louis for a medical conference the end of July and I have to be at my best. I made the decision to wait it out. Good girl, Lori. Should I be going at all? YES. I need CME credits for my license and this is a good way to get them. I feel I can make the trip without ending up in a hospital in St. Louis and besides, I am not ready to slide into the sick and dying role and stop doing what I love. One day, that will happen, and I won't be able to do adventurous things I do now. Amen that I can still do them at all. But when I am sicker, those things will stop and I'll be resigned to staying home, trying to hang on. Until then, I have to grab life by the tail and do all I can. Also, I am bringing along a friend with me to St. Louis. Wishing to appease Brian who doesn't like when I take off by myself to travel, I asked a friend who was born and raised in St. Louis, to come with me. Her name is Judy and she lives close by. Judy goes to my church. Her family still lives there, in St. Louis, so she is coming along to make sure I am OK and to visit with so many of her friends. I'll be at lectures and she'll be romping around and having a really happy time. I know we have plans to take in a ball game, as the St. Louis Cardinals are playing the weekend we are in town. Cool! Sunday past, our church had an amazing Patriotic tribute to the Armed Forces. The music, pomp and audio visual clips were awesome. In fact, I was moved to tears. Brian thought I was hurting (in pain) but I was so stirred by the emotion of the freedoms we have, that I silently cried. Other ladies cried too, I saw, so I was not the only one. I was reacting to the emotion of living in the greatest Nation in the world and am privileged to be here. The men and ladies who died for our freedom made the message hit home. It was a wonderful service. Thank you to the choir and musicians who put this patriotic 4th of July cantata together. My sister Brenda is in China on a short term (6 week?)mission trip. She is in some place out in no where, teaching ESL (English as a Second Language) skills to the natives. I don't know all the details, but she had an opportunity to go and she felt led by the Lord to go. "Go into all the world to preach the gospel" the Bible says. That part of China is muslim and they have to abide by the rules that repress women to the role of a donkey. They are owned by their husbands as chattel and have no rights. It's not for me, but there she is...doing a job he heart led her to. Amen for her witness. Come home safely, sister. My other sister Noreen, is in Scotland. She called last week and we chatted. She was 6 hours ahead of our time so it was supper time there. They (she and husband Gordon) are having a wonderful time visiting family. The weather was not too pleasant but they had lots of relatives to see so that kept them indoors. They are there for 4 weeks. Noreen has her travel scooter with her and she can zip around quite easily with it. It really has given her back her independence, as walking is difficult due to back injuries. So they're are having a grand time and enjoying it. Everyone ought to get out and travel. It is so wonderful to be able to go to another country or continent, and see how blessed we are here in North America. Both Canada and America have it so good! My friend Cheri is not doing well and I believe after talking with her by email, she is really quite sick. She has CF too, and tomorrow, turns 48. Imagine....having CF and still being alive for your 48th birthday. It is another miracle that she has received medical care good enough to have kept her going this long. But then, she attributes her longevity to God. The docs haven't stepped up to the plate to be heroes, but God has kept her in the palm of His hand this long. Amen for Cheri and the friend she has been in my life. When I hear of other adults with CF who are older, I am overjoyed by it. Something to hope for. To pray for. But also, she is so sick she is praying for a painless death. Or as little pain as possible. She has been asking for mercy in her dying days and even now, she has a spark in her that has a will to live. But her pain is great and she is facing what we all will face one day: dying. I've had over 20 friends with CF die, and have gone to many CF funerals, but you never get so used to it that it becomes a given. You still want to breathe. You still want life, even when you are in the grip of dying. I have to cling to the promise that when I am in the valley of the shadow of death, I will fear no evil. That nothing bad will happen to me. I won't be afraid of dying. My angels will be there guiding me along the way. Without fear, I'll knowl peace. Cheri, you know I pray for you, and know when you are ready, when it's your time, you too, will greeted by your Angels. As we all will. I Love You, Cheri. Your Friend forever, Lori XO June 8 The weather has been wonderful here, but just a bit too hot for me. We need rain badly. We are about 8 inches below our annual needs for rain and the scorching sun beats down constantly on our flowers. They cry for rain. They are so very thirsty. I am not much of a gardener. I am always fearful that I'll see a snake in the garden and that thought paralyzes me enough not to dick around in the garden. We have groundskeepers who come every Tuesday to do our lawn maintenance. Amen for them. They do everything I don't want to do and they know how to do it right. We need rain. The flowers are thirsty. Today, Brian and I were on the golf cart zipping around our land (I was looking for litter to pick up) and there it was......a for foot black snake. I was anxious and fearful. Brian reassured me it was a harmless black snake that eats the field mice and mosquito's, so to let it be. I wanted him to run it over! We let it slither away but I was already on hyper alert and felt creeped out. It was four feet long!!!! My friend Cheri just celebrated her 48th birthday with low fan fare. She is very sick and clearly, in the end stages of CF. It will break my heart when she dies, but as Cheri is a Christian with a love for God, I know I'll see her again. We are promised that by confessing and accepting the gift Jesus Christ gave to us all. While her death will be sad, she will be the happiest she has ever been on the other side! This is what we wait for. For the pain of death to transport us to a new life free from sickness, disease and death. So she hangs on! Amen Cheri. My sister Dolly called me this week and we had a lovely talk. It is always so good to hear from my sisters. I love hearing how they are doing and what is happening in their lives, and with their kids too. I have 12 nieces and nephews in Canada and I love them all. I wish I could see them everyday. I don't want them to forget Auntie Lori. Our pool installation is coming along slowly. A little bit each day. Here is a photo.
Pool boy Brian has to pay for the pool somehow, so here he is cleaning and vacuuming it. Good Job Brian.
Friday July 13 My day started out great but then being Friday the 13th, anything can happen. Guess what?? My Mic-Key feeding tube button, fell out. This is the small device in my belly that goes into my stomach and was used to feed me when I wasvery sick. I haven't had to use it for a year and I have asked to have it removed, but the doctors wanted it left in "...just in case" I might need it down the road. So there it sits, in my belly and causes me no problems or pain. I lifted up Tucker to play with him and then he jumped off my lap and his back claws took the button with him! YIKES!! The balloon broke on the button and when it deflated, all my liquid stomach contents flew out. Not pretty! It looks like ground up coffee beans. Now my first reaction could have been to panic and call 911. But this happened to me about 2 years ago, so I knew I could handle it. I also was prepared. I had bought 3 new Mic-Key G Tube replacement kits just in case this would happen again. And it did. When the last one popped, it was the first time I had to step up and put one back inside my hole myself. Previously, only the surgeons had done it. Not me. But not wanting to make a mountain out of a mole hill, I knew what to do. I laid on my bed, held my breath, and quickly and firmly, inserted another G Tube Button into the hole. Whew. A little bit of pain but nothing needing Tylenol. Then I filled the balloon with 6 cc's of sterile water and voila! It was back in place and worked. I was very proud of myself for not panicking and not having to call 911. Had Brian been home, he would have called 911, but I don't like all the drama that brings and I knew I could do this. Here is a photo I took of my burst balloon. The whole balloon "popped" and then it slid out of the tract in my belly onto the floor. Amen I had a spare and could re-insert it with ease. Thank you Jesus for guiding my hand and allowing me to do this procedure without complications.
So now I have personally replaced 2 ruptured balloons on my Mic-Key button and I could do it again when it happens next time. Then I sat myself at my computer and my second misadventure hit me. Today is not a happy computing day for me. I have managed to download a whole bunch of nasty virii and I'll spend another 72 hours trying to recover. It began when I tried to re-install Photoshop and my serial number had expired. I tried many times to get it to take but no good. So then I downloaded a key generator that introduced a virus into the equation and from there, it propagated and mutated. Despite buying and running Spyware Doctor, Norton 360, Norton Anti-Virus, Windows Defender, Windows Live Once Care, System Suite 7 and Registry Repair, NOTHING will work except to completely do the worst possible thing: Reformat. Completely wipe my computer clean and begin all over. Whew. It will take hours to do this but I'll begin with a virgin slate and I have learned my lesson about Malware, Hijacked Browser programs, and Trojan programs. Gotta go. I have to call Dell (in Pakistan) to get a techie to help me. It takes twice as long because their English is so hard to understand! That's what happens when greedy American companies outsource their work to foreign nations who think $3 an hour is a huge windfall of a wage. Will chat when I am back on line and working. Gotta get these bugs out.......Love Lori Monday July 16 Wow. What a trial I had with re-installing all my original software programs! I've spent hours and hours, both on the phone to tech support and in my own office installing tons of stuff. Dell came to my rescue and worked with me to do a flawless hard format of the computer and then it was up to me to do the rest. I am surrounded by 42 boxes of software needing to be re-installed. I own only legal copies and have to load it all back on the new hard drive, which is now bug and virii (plural for virus) free. I had 9 stealth virii hiding in my system registry files and despite buying 4 brand new software programs that promised to find and fix all the problems and make my life easier....NOT! They left the hard stuff alone and the inevitable fix was to re-format my hard drive. Not one stinking so called fixable software program fixed my problems. OK...lesson learned. Always run a trusted anti spy, anti phish, anti spam, anti taliban, anti-vegetarian and every other possible deadly enemy out there, program to keep you protected. And don't download the cute email that says....Your Family Has Sent You a Greeting Card.....It is malicious malware that will sink your ship. Been there, been sunk. I also lost all my email addresses, so until I hear from you all again, I don't have your contact info. I might be out of touch for a bit until I hear from you first, then I'll add your address to my address book. Too bad as I lost some addresses I'll probably never get back. Darn. On the bright side, I had a great day at church yesterday and today, it's 96 degrees outside so I am happy to be inside where it is cool. The humidity is tough on breathing when the air feels so hot. And then in sweating, the salt crystals form on my hairline and face and it's a constant reminder that I should be inside, not dripping sweat. So I go inside, grab some pretzels and water, and cool down. I've spent all hours today working on rebuilding my computer. Now if I can just get the computer to communicate with the scanner... Another friend with CF died a few days ago. She was 38. She has just been listed at Duke for a lung transplant on Tuesday, but died on Wednesday. So sad. But now she is breathing perfectly and not ever going to cough again and puke up nasty lung goo, so she really is better off in Heaven. Another friend is also scaring me as she too, has one foot in the grave and the other on a banana peel. She of course, has CF and it is killing her everyday, yet, she still manages to email me a few lines of encouragement each day just to check in with me. I love her dearly. My other pal with CF is home now after being at Duke for a tune up and is dragging her butt but trying to feel better. Her new lungs are 6 and a 1/2 years old and she is a success story. By far, the best billboard for lung transplant is my pal Laird. He is now 7 years out and he is a real Mountain Man. He hikes, bikes and walks his dogs and does everything with his gift of lungs. The donors family would be so pleased how well Laird has done with their gift their son gave. Laird and I talked about this on Sunday and if I were magically to be called and offered new lungs tomorrow, would I take them? Hmmm. Nope. I have seen too many friends die as a result of the surgery and of transplant complications, that the time I have now is my bonus time on earth. I am not confident I'd do any better with new lungs and think I'd be one of the folks who does not survive to leave the hospital. My friends James did not leave UNC. He died post op in the ICU. My friend Jeff also died in the ICU, but at Mass General. And precious Angie died at Duke very quickly after her transplant. She never woke up. Died in the Duke ICU. So the reality of transplant is you are trading one sick and dying body for a chance at a healthier (but not perfect) body and I don't think I'd come out a winner. So "No Thanks". As if I'd ever have the chance again, eh? Been there, done it, got taken off the list. OK....I should close now as I have a tone of software yet to install. My sisters are all in my prayers and I miss you all very much. Know that I love you all and can't wait until we see each other down the road. Love your little sister Lori. XoXOooooXXXXXooO Saturday July 21 I'm leaving on a jet plane....to St. Louis... for a week of book knowledge and learning. The School of Medicine at the University of St. Louis, offers an intense course every 2 years in death investigation. I was enrolled to attend 2 years ago but instead of being there, I was sick, stuck in Club Med. This time, I wanted to go and not miss it again, so off I go today. I mean, really now....I might not be alive in 2 years when it comes around again, ya know? Brian will stay home with the furry pets and take care of the home. I'm taking along a friend with me for comfort. Judy is my neighbor, and she was born and lived in St. Louis. So while I'm in lectures, she will be hanging out with her family and meeting lots of relatives. She even has tickets to a baseball game. Judy will keep an eye on me, change my Fentanyl patches, make sure I am still breathing, and allow Brian to have some peace of mind knowing I am not alone. OK family, friends and furries....I'll be back in a week (if it's the Lords will) and ask you keep me in your prayers as my CF is trying to act up and now is NOT the time to be doing crap like that . Stay well, be well, pray well. Love Lori August 1 I'm home from St. Louis. I had a wonderful time at the Masters 12, Death Investigators course. My boss Dr. Kinnison and her husband were also there, so I knew someone. A new friend was made too. At break time, a lady came up to me and asked if I went to Duke? I said "Yes. I go there for medical care". She asked "Do you know Laird Proctor?" "Yes! Laird is a sweetie and I know him and Wynn too!" Well, turns out her name is Debra, she lives in Boise, Idaho, and works with Wynn at St. Alphonse hospital. On a quiet shift, Wynn showed Debra my web site, and Debra was hooked. She read all about my adventures and then when she saw me in the lecture hall, she was bug eyed! There I was! The Lori she had read about. Here. Alive...in St. Louis! Could it really be me?? We sat near each other and Debra walked with me to lunch and we shared our stories. She in a nurse in the ER and also investigates death cases for the Coroners office, so she was at the Death conference The most interesting lecture was done by Dr. Garavaglia, who hosts the TV show, Dr. G. Medical Examiner on the Discovery channel. Her talk was about "Deaths at Disney", and the deaths that Disney does not want you to read about in the newspaper. Disney is very quiet about this, and does not wish to tarnish its image as the "Happiest Place on Earth". However, people die there. Most of them are quite sick to begin with. Suppose you are told you have a fatal condition that will kill you in a few months. Most people think about the one or 2 things they must do before they die. For many people, this dream involves Disney. Dr. G explained that many very sick people hop a plane, head for Disney, take a spin in the tea cups or try out Space Mountain, then when the ride ends, they are dead. They died. Well....take a very sick person, toss them around at a few G's on a fast ride, and you too, might die. Sicker people tend to do that. They die. Also, quite a few unsuspecting people try their hand at a fast ride and they die, but this time it's because at autopsy, they had an undiagnosed, potentially fatal, pre-existing heart or brain condition that under the stresses of a thrill ride, will, and can kill you. Take a weak heart, toss it around doing loop the loops, and the person dies. Or an undiagnosed brain aneurysm ruptures during a thrill ride, and you die. Would have happened where ever you were at that moment, but it had to be that you were at Disney when you pushed your luck. You're dead now. Nothing Disney did made this happen. Pack you suitcase and prepare for a funeral. You're dead. Her talk rocked! Click here to read another article about Deaths at Disney.... Now I am home, caught up on bills, laundry and loss kitty time with the furries here, I am heading to Duke soon for an admission. Time for a tune up. My trach stinks and the sputum has to be hit up again with IV antibiotics. My hesitation to go in because I'll have to have a femoral line put in and I hate that. That makes me not want to go. Much pain. I hate having it done. I cry always during the procedure. I'll call Duke toady and let them know I need a bed. I hate this. Will chat more later but for now, it's nap time for me. Love to you all, Lori oXxxooOOO August 2 I've taken the step of contacting Duke to arrange an admission. As there are just 4 rooms set aside for CF patients who use a ventilator in the ICU step down unit, getting a bed can sometimes take a few days and a lot of bed moving for the staff to create an opening. Now if I were to go down and emergently show up I the ER, I's probably be put in the ICU until a step down bed could be made, but that is too much attention for me and I can hold out, so I will. It also allows me a few days to work out my worries about having a femoral line placed. OOOOOOh how I hate that procedure, yet every time I am admitted, I have to have it done. I know it is staring me in the face and I have to do it, but the pain and anxiety are difficult to manage. In fact, I have sometimes held off going I sooner because I know what will happen. This wastes precious time when I could be getting IV antibiotics, but the human part of me that hates suffering and pain, comes to the forefront when I have to be admitted. In my anxiety, I prayed. I asked the Lord to let me feel His hand of comfort surrounding me. I can't play super patient all the time. Even I break down and cry. I suppose I ought to be so very thankful that they can even find a vein at all. Period. After all, I am a very difficult stick. So in my angst, I was lead to a verse in the Bible. It says, "Behold, I am the LORD, the God of all flesh: is there any thing too hard for me?" Jeremiah 32:27 Nothing is too difficult for the Lord. So as always, when I am on the procedure table and they are ready to poke my groin for a vein, I'll call upon His name and seek His presence. I always ask the Lord to send me Angels. I always pray, "Lord, send me an Angel NOW! I need an Angel now". And when they get it sewn in, I always end my praising His name and saying "Sweet Jesus! Thank You Lord!" Every time. Count on it. So now I wait until Duke calls and says "Come on down! You're the next contestant on Wheel of Misfortune". In ending, I want to say how vital and uplifting my husband Brian has been throughout these trials. Brian always comforts me and tells me everything will be OK. He sees the happy ending while I see death. Brian was the man God created just for me. He gives me soft foot massages, washes my feet and lotions and powders them, and always tells me he loves me. Brian is the second best thing in my life. The first? My personal relationship with Jesus Christ and the assurance I'll be in heaven. Got Jesus? August 3 Duke called. Monday. Drive on down. Seeing as I have to go to the special procedure room to have a femoral line put in, they have do be done Monday to Fridays, so coming this weekend would have been wasted time as I would not be getting any IV antibiotics until Monday, when the IV is sewn in. They were making arrangements for the Interventional Radiologists/Surgeon guy to book me in for an afternoon procedure. Brian very quickly and without any hesitancy, volunteered to take me down Monday and miss the day off work. Another reason to love that man I married! So they will be ready for me Monday afternoon. It's a 4 hour drive to Duke and I usually watch a movie in the SUV. We always stop at Cracker Barrel but I have to have an empty stomach for the procedure so I won't be eating along the way. Won't hurt me either to loose a few meals. Today, Brian called home and asked our Housekeeper if I was blue or pink. He wanted her take on how I was looking. She said I had blue cheeks and needed to go lay down. She made me go to my bed. Another special person I love! Thanks CJ.
Brian also took our cat Taylor, for her diabetes check up today. Her blood sugars have been running high but today, it was low. She must have eaten well before he packed her up for the trip. But her sugar was a bit too low, in the seizure range, when they got home. So I treated Taylor to some ham, which she loved. Her insulin shots are still twice a day, but we have cut back on the dosage as a result of today's blood sugar results. We will bring her back to the Vets in 6 weeks to reassess. Taylor really has come along nicely since her diagnosis. With the correct treatment (insulin), she has plumped up and is feeling better. My sweet Taylor Girlie. August 6 It's 5AM monday morning and I am awake. I am thinking about Duke. I have my stuff packed and am ready. I even packed my laptop computer so I can stay in touch, and work on my web page. I am resolved that whatever happens today, is in the Lord's hands. I'll page the CF Nurse about 9 AM to make sure they have a bed for me and I'm to go down. It's a 4 hour drive and Brian has taken the day off work to take me. He has stepped up to the plate yet again and put my needs first. What a loving husband I have. Truly a blessing. Thank you Jesus for Brian Hughes. Last night, we had violent thunderstorms that knocked out all our power. Brian was so happy because our 35 kilowatt generator kicked in and covered us. In just 15 seconds after the main power line went down, we had full power back on. The neighborhood was all black and in the dark, but we had lights and air conditioning going at full speed. Our neighbor asked if they could plug into a lamp post to grab power for their fridge and freezer, and of course that was fine with us. The power was out for 3 hours, then about 11PM, Virginia power sent a truck to fix the downed power lines. For the 3 hours it happened, Brian was so delighted! He was pleased his generator kicked in and that were this a regional emergency, we could count on it working. Before we moved to our present home, there was another severe storm that left the area without power for 8 days! The previous home owners were not prepared for such a long outage and only had puny Honda generators that couldn't do much to help them survive. As we are in Hurricane and Tornado country from October until March, Brian saw to it that we would not be stranded for power way out here in the boonies, so we bought a huge generator to supply our needs. It is as big as a huge garbage dumpster and sits attached to our garage on the side of our house. It takes 15 seconds to kick in when the power fails and can run for 10 days on 350 gallons of diesel gas. It absolutely provides emergency back up power for my ventilator and other medical equipment so we are not stranded. Why I mention all this is to tell you Brian was delighted with joy to have power last night while the neighborhood was in total darkness. He prepared for this moment, and his planning worked. Good Brian. My sister Brenda, #2 sister, comes home from China right about now. My sister sand I have talked about her adventures in China for 6 weeks and know she is due home now, but don't know the exact day, but it must be today or tomorrow. I wonder if she really likes rice, or hates it? I wonder if she now has a heart for China and its people. She went as a teacher of English and I know she was witnessing for Christ and bringing Jesus to the communist people. I'm sure she has changed for the better as a result of this experience. I'll call soon to find out more. Welcome home, Brenda, good and faithful servant! OK family and friends...expect that I'll be able to email and update my web page while at Duke when I feel able to. You can call Brian to inquire about me and as yet, I don't know my phone number at Duke, so either just call Brian or email me. Please pray for Brian and I, that the Lord will cover Brian with His love and take care of Brian in my absence, and also that the doctors find the femoral vein today with little pain on my part and that I respond favorably to the IV cocktail. Pray for the Lord's will to be done and for me to come home feeling better. I'd appreciate you doing that. With much Love, your sister Lori. XOOooOOXoxxxXX August 7 Prayers answered!. After a very difficult try, the surgeons got the femoral IV line sewn into my groin. There is a lot of scar tissue at the site from repeated (9) attempts at hitting this vein and so it was a hard push to get through the scar tissue. All the time, I was whimpering and crying under the drapes. I was talking to the Lord. I was asking Him…”Lord Jesus, send me an Angel NOW! I need an Angel NOW Lord! Let me feel an Angel comforting me…” I called His name so many times during the 90 minutes in the procedure suite and everybody certainly heard me. The Lord answered by allowing the vein to be located and entered. Now I am hooked to this IV in my groin as it does its job of administering IV antibiotics to my hurting lungs. Usually when you have this procedure done, you sign a consent form for sedation and pain meds. But because they could not even find a vein to use, I had to go cold turkey. No pain meds and no sedation. Wide awake, on the OR table, nude, talking to my Lord...and in PAIN. I thanked the docs when they were done, and was rolled back to the floor to my waiting bed. I slept for a little, exhausted and in pain. My whole groin felt as though someone had kicked me with a hard toe, steel plated work boot. I received many emails of praise and prayer from those I wrote to and I heard from my sisters too. Brian would have been here had the IV line been done yesterday when he drove me here, but such was not to be and I sent him home to Virginia. Brian and I talk at least 5 times every day. Dr. Kussin came by to see me although he is off service this month on the floor. But still he comes to visit me. We talked about the line placement and about doing this tune up and going home. Another typical tune up of about 14 days then home. Works for me. My friends Shannon and her sister Lori called me and chatted. Both are Duke Double Lung Transplants for Cystic Fibrosis and both are hanging in and living with the challenges of compensating with new lungs. Another mutual friend we both know is also here at Duke, but in the ICU. She was hoping for a second set of new lungs but took a turn for the worse and is not expected to survive. Every day, your life can change for the worse and you die. Cystic Fibrosis is a death sentence. All my CF DNA is programmed to do, is to kill me. Period. I pray our friend has dying grace as she walks through the valley of the shadow of death. I had a small fever today, 100.1 degrees but it was most likely a febrile reaction to the stress of surgery, and not a true fever. Took some Tylenol and am watching it. My oxygen saturation (SpO2) numbers are reading low for me. I am hanging around 91% on 60% oxygen. And with a large Tidal Volume (860L) and a high Pressure Support reading of 26, it means my lungs are stiff and leathery, and don’t “bend” too easily. Like its name, Fibrosis….my lungs are “Fibrotic” and the ventilator wave form graphs show this. I slept well last night on the vent, except when they woke me up at midnight to take vital signs. If I’m asleep, please leave me be. Don’t wake me. More tomorrow. Love Lori… August 8It was another hot day here in the South. Durham reached 101 degrees and the nurses advised me not to go near the front door of the hospital because the hot air is very heavy and makes breathing difficult. I didn’t venture out of my room to test their theory. I slept most of the day, bided on some stuff on eBay, and watched Judge Judy. Brian called as did his mother. I am still too short of breath for me. This will get better. August 10Dr. Kussin just came in with Edana, his wonderful Pulmonary Nurse Practitioner. This time, I am only on 1 IV antibiotic. It is called Zosyn and it is every 6 hours. Why just one? Well the pharmacy guy looked through my sputum microbiology reports and decided that just Zosyn would work for me. That is a significant difference from 3 IV meds. So I got to think…..why be here just for 1 IV med?? The answer is because IV access is so difficult that I have to have a femoral line, and home health does not take patients who have a femoral line. Hmmm….. Doesn’t sound Kosher to me, but Dr. Kussin is the guy in the know. I asked him to please call my home care company in Chesapeake and ask them if they would take me on as a home care client with a triple lumen femoral line. He said the simple answer is “No”, but he’d get an official answer and get back to me Monday. It makes sense to me to be home for just 1 IV, as I had done for 7 years in the past, until I lost all the possible veins in my chest and arms, then I had to have femoral lines. I feel as though I am a revolving door, and running back for just 1 IV med makes me less “needy” to be here. Even a few nurses have asked…”Can’t you get home care for this?” So I know they are talking about it too. With beds being so tight here (and at all hospitals), I feel as though I am wasting a bed when I could be doing this at home, if only a home care company would allow me to come to them with a femoral line. Brian is not too keen on the idea. He sees the down side of leaving here with a femoral line. It’s very delicate, is in my groin (not a clean place), susceptible to infection be being down in my crotch, and having a monthly period further complicates cleanliness. I hear his concerns, and they are all valid. I too, know that should I have a single chill, fever or rigor, I’d be in the ER STAT! Sepsis is something I might not survive. It nearly killed me in May 2002. So for now, we wait. The answer is in God’s plans. Whatever comes of it I’ll accept. Aside from that discussion, Dr. Kussin said I sound “horrible. My usually wet junkiness”, he said. So to hold on… that I need to be here longer. It’s Friday and the weekends here are so slow, but then Brian is coming! So that makes me so happy to be able to have him come visit and stay with me. While out walking to halls yesterday evening, I came to the room of another adult with CF who I know by her web site. “Patty Sue” is being evaluated for a double lung transplant here at Duke and she was glad to see me. We had only talked on line, never in person, and now she was here for testing. We talked about some of the adventures ahead for her and how you are trading off one disease for the complications of transplant. Getting rid of CF in your lungs but now having to change your life 360 degrees due to transplant demands is difficult. It’s something you think you have a handle on, but you never do until you are a few years post transplant and can look back and see what has happened. It’s a position I have not been in, being denied a transplant myself, but now, would I go back and sign up for new lungs if they could come tomorrow? Probably not. Most likely not. It’s a rough ride post transplant and too many friends of mine have died trying. I’m ready for my life in Heaven, so I think I’d say NO and enjoy what I have. However, for others, I’m 100% supportive if that’s what they choose. Give them new lungs, but not for me, Thank You. Love Lori August 10 Today Brian is arriving. We’ll spend some time together here in my room this weekend and laugh and cuddle. What joy it is when he comes to visit for the weekend.
August 13 I am feeling better and not having as much nasty sputum as I was when I came in. Amen for that. I am still sob (Short of Breath) but it is not as bad as before. I have discharge plans for next Tuesday. I’ll be ready for home then. My friend Shannon came to visit me today while going to Transplant clinic here at Duke. She is looking good, if tired, and we had a nice giggle while all the nursing staff dropped by to see her. Everyone here knows her well and they like seeing her healthy and well. The miracle of new lungs can do that! I continue on the prescribed plan and walk the halls in the evenings. I usually go down to the cafeteria to buy some bottles of Peach Snapple for my meds. My first sputum culture came back as not growing anything! Obviously something went wrong along the way for the lab to say nothing was growing from that awful yellow cesspool I coughed out. So I sent more today and will try again. Dr. Kussin was amused too. He saw the hideous stuff coming out of my trach and for it not to be growing any CF bugs is insane. We'll cook some more and wait. August 20 I've been a good patient and am going home tomorrow. The micro lab reports my sputum are growing 2 kinds of nasty bugs and they need more time to work on them. Told ya so! I knew I had weird bugs doing no good by the taste and smell of the rancid stuff, so I feel happier I am right. It always turns out to be my lifelong friends called Pseudomonas and Burkholderia cepacia. Point is...I am doing a little better on the meds I am on. Home tomorrow. Thanks you Jesus for allowing this one and only vein in my body hold up and work for the duration of therapy. Thank you Lord for hearing my prayers and cries when I needed you most. Thank you for always being available, 24/7, for my needs. Time for bed. Amen. August 21 Jump ahead 16 days later. I am home. More to follow when I have rested and feel up to writing. September 6 It's been a while since I've written here, but my life just got busy for a bit. I have been feeling OK but not quite up to being great. I'm still a bit lagging, and I don't like to feel out of the loop. Nothing specific, just tired and lazy. I have been watching the song birds outside my bedroom window and lately, I have noticed we have mo I was going to meet my friend Shannon today for lunch, but she just called and doesn't feel well today. That's life with CF. Some days are good, most are not. All days are given over to treatments, beatings and inhaling meds, all to keep you alive longer. I'm going to be a Great Auntie again soon, as my nephew Timothy and his wife Amanda will deliver a baby girl, and then my neice Stephanie and her husband Alain will also deliver their little baby in October. We haven't any worries about my CF genes being passed around as all 3 of us (Tim, Steph & I) are adopted, so that isn't a concern, although every 1 in 20 White people carry a CF mutation and don't know it. Hey, it happend with me. Both parents had one gene, and when they mated, their single genes came together to give me a double hit of both their copies, so in getting one from her and one from him, it made me have CF. I am thankful for each day and as Joahann van Goethe wrote: Nothing is more important than this day. So in each day, I find praise for being alive, knowing that until the day the Lord comes again, or until I die, each breath of life is a gift from God. Love from LorixoOx September 7 Today, I had such a lovely day at home doing nothing. I spent hours on my computer doing stuff, working on web prog Jaxson is on the left, then Buddy, and lastly, Puddy Cat. When Buddy and Puddy Cat wag their tails, Jaxson is kept amused trying to catch them. Most times, one of them is plopped right in front of the keyboard, so it's a guessing game to spell words correctly. Ah! The joys of the Residents of Villa Morris-Hughes. Recall if you will, we also have Sugar Gliders. Randy, Mousey Mouse, and Joey. We have found a novel, Pavlovian way to get them back into the cage in the morning. Now recently, only 1 or 2 of the "rats" (our affectionate term for the Sugar Gliders) have made it back home. The missing one? Usually in the couch. As in...inside the couch. He has bored a hole into the stuffing of the couch and now gets lost inside the springs, cotton fluff and stitches. The little rat has made a home inside the bedside couch! I was amused at first, but then I wanted him out. They wiggle and move and the gliders are thrilled to grab one, bite the head off, and nibble on the body. Then they come back until the batch is gone. They would eat all of them if I didn't ration them out, and they are getting a bit 'pudgy' from this gut load of protein, but it's good for them so enjoy! The 3 of them are a little "pudgy" from eating so many meal worms, but we have to simulate their natural diet so we buy fresh, alive insects. The grasshoppers didn't do too well. They kept hopping out of the cage! We lost them all and had to give up on them. Here is a picture of Brian and his Sugar Glider pal, named Randy the Rat. They are fun little pocket pals September 17 Our 3 Sugar Gliders continue to amuse us. Randy is quiet and homey, but the other 2, WOW! They are a handful. A few mornings ago, as the sun rose, they usually home in on their tent and crawl back into their cage. When I felt the tent they sleep in, I knew it felt too light to have 3 Sugar Gliders inside, so that meant 1 was hiding somewhere in our bedroom. This happens sometimes. When the sun comes up, they head for home, but sometime, they don't make it home and so hide out high atop the curtains. There they camp out for about 18 hours, then come back down when it is near midnight and dark again. So I knew I had one loose Sugar Glider. No biggie. It happens. Just close the doors and keep the cats out. About 5 PM, I am in my office and I let Jaxson and Puddy Cat in to join me. They jump up onto my desk and keep me company, but then Jaxson homes in on something in the curtains. I figure he has found a bug, like a moth or maybe another cricket. When he get's a little aggressive, I remove him from the office and lock him out. Just a few minutes later, Puddy Cat alerts on the same bug, and wants to play with it too. I get up and remove her too. So now I am typing away at my computer and I lean back in my chair, and low and behold----a Sugar Glider is hanging from the curtains! Mousey Mouse is staring at me! How the heck did he get out of the locked bedroom?? So now I know why the 2 excellent mouser cats, alerted on the curtains! No insect, cricket or bug, but a $200 Sugar Glider! I go to the fridge to get a tupperware container of meal worms to coax him to come down. No go. Mousey won't come. It's too bright out still, and he won't come home until it's nearly 11PM, and very dark outside. We play a waiting game. Brian comes home at 6:30PM and I tell him about the adventures I've had. He checks every so often for Mousey but it's not until nearly midnight, with a bowl of meal worms in his hand as an offering, that Mousey Mouse obliges us and jumps to Brians outstretched arm. Time for cuddles, a little scolding for his errant behavior, and then he is reunited with the other 2 captives. Such is the unpredictable life of our awesome Sugar Gliders. September 20 I had a good day yesterday, Praise the Lord! I'm coughing a bit more, but I'm not feeling badly for it. I am "puffy" and feel like the Pillsbury Dough Boy. But any day above ground beats being 6 feet under, right? Unless of course, you are in Heaven, then EVERYDAY is Glorious! Am waiting to get my admission papers to confirm I'm being admitted this coming Sunday to Duke, for a CF tune up. We met with a company that will put solar panels on the roof of Brian's studio to heat the pool. My electrician told me about it and brags about how his heat costs him nothing, since sunshine is free. So we have done our homework and will have 13 panels installed--soon. This will not automatically extend our pool usage to 12 months of the year, as even in our mild winters here, we lack enough sunshine to heat the pool hot enough to use it in the winter season, but for the months we do use it, we can pretty well expect temperatures of 86 degrees and higher. My electrician said his wife was swimming laps this morning in their 88 degree heated pool, and she will do this until the end of October, then they close their pool. Sounds promising. So we expect to be able to open the pool April 1st until November 1st, and have constant heat. Nice! So that is our next project to do while we wrap up completion of our newly installed San Juan pool. Did you know that in California, there’s a big stink now about the If you are alarmed about this as I am, you can read an excellent editorial about it by clicking on the graphic to the left, of the boy pledging allegiance. Go ahead...click. You will be taken to the web site of an artist, mother with 2 kids named Marnie Freeman who paints her heart out for just causes. You can also go to any search engine and type in "anti-Pledge of Allegiance" and get hits for other sites that want to wipe this out of the mouths of all Americans and despise the mention of the word "God". Well one day, they will face this very God that they have so vehemently espoused hatred for, and then they will bend at the knee and shake in shame for their actions. The final judgment is in Gods court, and He alone, has the last say. Amen! September 22 I've had a good few days, not at all feeling "sickly", but Duke called. They are expecting us to arrive Sunday afternoon. They said I should plan on getting to church in the morning, and then driving down. Good, as I need to be in the Lord's house tomorrow, on Sunday. I have to pack some more things. I usually pack a month ahead of time, but this time, I have left it to the very end without obsessing, and it's OK. Just a few more goodies to go in the suitcase and I'll be ready. This is a planned tune up, so I'll be there for 15 days, then home. Then I have a medical conference in Savannah Georgia for a week, then home, wash laundry and pack for our cruise. Busy time for us and prayerfully, I'll be well to go. We plan and pray all year that when the cruise comes, I'll be well enough to go. Hey, I've stood at the pier and waved goodbye as my family and friends went Bon Voyage without me. Been there, done that, waved them off. Not a happy time, but they sure did have a fun time, and that is what I wanted. I've been praying for the son of a family who was injured in a fall, and I heard from the father on Friday that his son is coming along nicely. Many people have held the Murphy family up in prayer that the lad would survive without serious brain impairment, and although there are some stumbling blocks ahead, the outcome is better than expected thus far. Amen for answered prayers! Thank you Lord for showing the Murphy family how much they are loved and for bringing people into their lives who stepped up to the plate when they needed help. 43 million Americans do not have health insurance, and for those of us that do, we are blessed to be able to go to the doctor and have medical care in the hospital, without bankrupting us. Amen. I have another Grand Niece. Teaghan was born this week to my nephew Timothy and his wife Amanda Elsewhere, Brian will be in charge of the house for the next 2 weeks and that means 5 cats and 3 rats (also called Sugar Gliders). He always does well, but amen for our housekeeper who always has the house right the way I want it when I come home. She knows exactly how it needs to be to make me relax and not be annoyed. Please check this web site, but last time, I could not infiltrate the security at Duke to upload my pages, so if that is the case again this admission, I'll be quiet and out of the loop for 2 weeks. I might have to sign up for another web program to allow me 24 hour access from anywhere. We'll see. Keep me in your prayers please, and Lord willing, I'll come home feeling better and coughing less. Love Lori. September 25 I see one boy I know from other visits, but we don't talk. He walks laps around the floor but that is all we see of each other. He has CF too. Mostly it is lung transplant patients on the floor now. I am again, in isolation for my CF cooties. Hey, it comes with a private room, shower, TV and meal passes. The privilege of having CF cooties. Dr. Kussin is the attending now which is wonderful! Anytime he is on, I am happy. I love it when his coverage overlaps my tune ups. I like it when he calls the shots because we talk options out before we do things, so we are in agreement for the most of it. Also, on the days when he rounds on me, he usually is up beat and talkative, so being friendly means you look forward to his visits. However let me say that over my life with CF, THE BEST attending ever has been ....Dr. Randy Garnett. Top Notch, good listening physician. I am receiving IV meds for my CF bugs, to make our upcoming cruise more enjoyable, so I won't have to be air lifted off the ship to a third world country in respiratory distress. Makes sense. Tune me up as best I can be and let me go. Hope for the best of it. Brian is very excited about the cruise. He will bring his radio receivers and sit on the balcony of our suite and listen to broadcasts most all day. Works fine for me. OK...I'll close here. Know I am in good hands, will be feeling better soon, and am doing what needs to be done to get on that ship in a few weeks. My Love to you all, Lori XO September 26 Good Morning. I had a good night off sleep. I was up watching a movie until 2 AM, then fell asleep quickly. Slept right through until vital signs check at 7AM. Dr. Kussin and his Merry Band of Students just traipsed through my room. Good mood, and we chatted about Brian's ability to kiss my lips and taste the sputum bugs lingering there. It's a unique thing not any of his other patients admit to, but he asked so I told all. He also said it is very common for CF ers to lose their sense of smell, due to repeated sinus infections. True, as I smell from my trach, not through my nose for most things. Many sinus surgeries desensitize your nose to smell. Makes sense. But I do smell things. So I haven't lost all smell receptors. I signed up to be a Leaf Pal again. This is when I send a box of Virginia Leaves to a 2nd grader in Oklahoma, along with a few freebie things from Virginia, like a pencil or postcard. It ties in to their study of geography and the US. I had participated for about 3 years, then missed 2 and am now back on the list again. When I get home, I'll collect my leaves and send them with a note to my selected student. Something to busy me for a bit while I befriend a little 2nd grader in OK. I feel OK and am well enough to log on and update y'all, so this will be a good day. Amen for today. With Love, Lori OxX September 27 I had a good breathing day today~Amen. In fact, my coughing is less and I am not having as much sputum, although it is as yellow as a lemon, still. But less sputum is a good thing. Dr. Kussin rounded on me with his team this morning and I managed to get him and every one together for some photos. I grabbed my digital camera and took photos then gave the camera to the nurses and asked them to take shots of their co- workers. I am putting together the photo story and hope to have it here soon. I have to wait until I am at home so that I don't max out the space on Dukes server. I am fortunate they supply free Wi-Fi throughout the campus so I can't abuse this privilege. A friend named Rita came by with her husband Keith, for a visit today. Rita lives in the same city as I do I had a wonderful phone call from another Duke transplantee today. Laird is 57 and had a lung transplant for CF. He is now 7 years out and a true miracle for an adult with Cystic Fibrosis. We met at Duke in Transplant Clinic. He flies in from Idaho for clinic visits. Also, my Duke friend who works here, named Jennifer, came to visit. Jennifer is sure a fun loving person and has a gorgeous baby girl! Jennifer came by today and she usually sneaks me a box of Lucky Charms, but I told her I'd pass now and eat the 2 oranges I have sitting on my bedside table instead. Thanks Jennifer for your company today. OK Family....the Respiratory Therapist is here to do my treatments and get the Ventilator primed and calibrated, so I'll close here. Know that I miss y'all and love you all dearly. I miss Brian, the cats and Sugar Gliders too. My discharge date is scheduled for Sunday October 7th. Thank You Dr. Kussin and the Nursing staff on 7800 for taking care of me and helping me feel better. Thank You God for the vein that allowed the IV to deliver the meds. Amen. Love Lori OxxOo October 1 Another good day today for me. The weekend was quiet on this hospital floor and mostly, I slept. I got up at 7AM, inhaled my 3 treatments (Albuterol, Pulmozyme then Tobi) and then waited for vital signs to be checked. Then breakfast came. I had a banana and Corn Flakes with 2% milk. Next, my nurse came in at shift change and we chatted while she assessed me. I watched some news programs and slept a bit more. The weekend pulmonary doctor covering the floor rounded and all was fine. I eventually went to the cafeteria to buy some Snapple drinks, then back to my room. Watched TV, got on the internet, answered email, got on the ventilator at 10 PM, watched TV until I fell asleep, and woke up to Monday morning. On rounds this morning, it was said I am "sputiferous", which is a made up name for having way too much sputum shloshing around in my chest. So today I get extra Lasix, which is a drug that allows you to pee out excess water, so you lose a liter or so of water and feel less puffy. For some reason, I am more puffy and swollen than I should be. I didn't add any salt to my food at all so that is not the answer. Whatever…… While I should be more concerned about planning our cruise, until I am home and at my desk to make some calls, I am putting everything off. I need to pack for both of us, as Brian would only pack his radios and forget any underwear unless I do it for him:. I am working with the oxygen provider to have 3 big, 100 liter liquid tanks in my stateroom, then I can refill my portables and get about the ship with some ease. I'll feel joyful when I am home in 6 days. About 3PM today, a knock at my door brought an awesome basket of yellow flowers! 3 Lilies, Carnations, Daisies, Baby's Breath and Goldenrod, all make up this wonderful flower basket http://www.the1920snetwork.com OK…..Thanks to Judy for also calling me today and checking in with me. To Ruby too, who laughed and giggled with me over her recent cruise to Rome, thanks for calling and chatting with me. And everyday, I hear from my transplant buddy Laird. He lives in Idaho and inspires me with how much life he is packing into living with his donated lungs. He's 7 years out now with this awesome gift of lungs and he still skiis and climbs mountains. Now Laird is certainly living, and not any where near dying from his CF. We rant and rumble about everything, especially illegal immigrants and left wing politics run amok. Thanks Laird. And also to the other Lori, way up in Boston, who also is a Duke double lung transplant CF survivor. We email about life, CF and God. Time to close now. Drop me a word of encouragement. I appreciate hearing from you. Love LoriOxXOo October 2 As I looked in the bathroom mirror, I asked myself "Why am I this short of breath?" I am doing all the required treatments, and taking the Lasix medicine to remove excess water, yet my lungs are "wet". Well, so to avoid a possible DVT (clot), I'd better walk more today and cough out more junk. Dr. Kussin and his team of learners rounded early. It's always good to see him. Well today, he brought some wisdom with him. I'm to start on Lovenox shots while here. No saying NO to that. So we discussed the reasons. When a person has a central line placed, the rule of thumb is to protect them against a DVT, by injections of Lovenox into their belly once or twice daily. I was on this routine at home last year for 6 months straight, so I knew all about it. Well, I thought we had agreed that since I am up walking every day, that I could avoid this shot. NOPE. Dr. Kussin said his reports are that I am NOT as active as he'd like me to be, so I have to have the shot. OK. I see his reasoning and agree with it. As I have been more SOB these last 2 days, I have slacked off walking all over the hospital. Not fun when I have to stop in the hallways to catch my breath. So….the compromise is that I will walk as much as I can and also have the Lovenox shot each day. Hey, whatever gets me on the cruise ship in a few weeks works for me! We agreed that had I not come in now for this pre-arranged tune up, that I would certainly be unwell for the cruise. We agreed that I'd probably be calling from Fort Lauderdale asking for an urgent admission to Duke, to fix me up again, as by then, I'd be sick. So coming in before the upcoming cruise to optimize my health was a very wise decision for Dr. Kussin to insist on. Amen for Wisdom. Thanks Dr. Kussin. So today, my goals are to get dressed, and walk laps on the floor. 15 laps = 1 mile. I'll walk as much as I can so I can build up endurance for the walking I'll be doing on the ship. And also to be aggressive with my chest physio therapy to remove as much junk from my lungs as I can get up. Being stuck down there in the dark environment of wet lungs, makes an excellent breeding ground for resistant CF bugs. And also, to be happy. Today is dreary, but I have to be happy. Smile! I'm going on a cruise very soon:. I called Brian this morning to tell him of him of the above discussion and Brian is always very supportive. He shows concern and wants me to feel well to cruise. We have stood on the pier and waved Bon Voyage as the ship left without us…once. I was too sick to leave town. So we've been there, done it, bought the cruise. This time, we have more at stake and want this trip to flow without any medical diversions for care or sickness. The day is early. I'll report back later should anything else be of interest. Know that I appreciate your prayers and I feel optimistic the cruise will happen with us on board. Love Lori XOoX October 5 I am feeling much better and have less nasty sputum coming out of my trach. Amen for that getting fixed. When I came in, I thought I was OK, but I was really flying under the radar and really needed thi I slept most of all yesterday, seemingly exhausted and needing rest. today, I lingered longer in bed, watching AM television, before getting my croc shoes on and walking the halls. Dr. Kussin wished me a Bon Voyage and said he better not get a phone call from some doctor in Costa Rica, speaking in broken English about admitting me. We laughed, and said it won't happen. I'll be going home Sunday morning. Yeah!! My femoral IV line will be pulled and then off we go. Brian will drive, with a mandatory stop at the Cracker Barrel on the route home. I'll be back in the midst of the end of our pool construction, deck tiling, and landscaping. What joy! Thank you Lord Jesus, my Savior, and for family, sisters and friends, for your prayers. This time, I did not wake up dead and will be going home, to enjoy more out of life for as long as I can. Be well. Love Lori OxxO October 7 Home, but not without drama. Brian drove to Duke last night and we had dinner together, then he retired to his hotel room for the evening. I planned an early morning start to get on the road. It's a 4 hour drive home, so the sooner the better. My last IV med was hung at 6:30 AM and finished in 30 minutes. Now I was waiting for the pulmonary resident to come pull my line out. The resident doc comes in at 7:15 AM to pull the femoral lie out of my crotch so I can go home. She puts 10 minutes of very heavy pressure over the site and when it appears to not bleed anymore, I am on my way. I have my bag packed and have called Brian to come to the front of the hospital and pick me up. I get hugs from the nurses who wish us 'Bon Voyage' and off I go. I don't get far. Around the corner, off the unit....I've sprung a leak. Major femoral leak!! My pants were saturated with blood and I was soaking wet. My leg had not formed a clot, and so in walking, I sprung a leak. Blood filled my pants and ran down my legs. At the nursing station, I asked them to page Will, my nurse, and he met me half way in the hall as I walked back to my room. I laid on the bed, he stripped my soaking pants off, and pressed hard and long on the bleeder. Right then, he called Brian on my cell and told him to park the car and come up... right up NOW! Brian came to my room with his worried voice. Behind the curtain, I asked him to come in. He was astounded at all the blood...everywhere. Stripped naked, I was not ashamed as I had had Will many times for my nurse and have come to trust and love him. I was embarrassed to have pulled a foolish stunt like this though. Moments earlier, I was soooo happy, having endured a 2 week tune up and now going home. Will did exactly what was needed to be done, and he parked himself literally, at my side, pressing on my groin. He did this for 15 minutes straight, until it appeared we were safe. Another 10 minutes laying on the bed, this time covered by towels, and one last glimpse to make sure I was not bleeding. Will applied tons of layers of a pressure bandage to my groin and dressed me into clean clothes, and then I was helped into a wheelchair and pushed the rest of the way, towards the front door. I now had clean pajamas, undies and a shirt, but my shoes were drenched in blood. Will soaked my drenched clothes in water and bagged them up for the ride home. Brian and I thanked Will for being my nurse today and for instinctively springing in to action to take care of a very scary femoral bleed. The drive home was wonderful as I slept the whole way in the back of the car while Brian drove. I came home to a clean, waiting house with 5 kitties who licked and purred when they heard my voice. I was "rewarded" by them for coming home. Amen for this whole experience. Next time I have a femoral line, I'll walk around the unit for a lap or 2, to make sure I have clotted off enough to not bleed out. I was so anxious to get out of there. This episode showed me I need to slow down a bit and take things at an easier pace. Oh yeah....and to hold direct pressure on the femoral site for 15 minutes and test it out before I say "See ya next time" to the nursing staff. PS: It's 90 degrees HOT here today in Durham! Love Lori oOxx Thanks Will, my RN October 12 No rest for the weary. I have to get my head organized for the packing that lies ahead. Brian thinks all he needs for our cruise is 1 pair of underwear and a few t-shirts and shorts. Yeah, right! I think he's pulling my leg on purpose to get a rise out of me. We have done this before and he knows how much packing we must do to tide us over for an 18 days absence such as ours. Whatever....I'll pack and all will be well. Brian is dying to just stretch out on our verandah and listen to his short wave radio. Me? I'll walk around the decks, read a whole lot, and just do everything and nothing. Ahhhhhhhhhh....bring it on. Let me say I am feeling good and ready for this adventure. No shipboard dramatics for me. If I get a good satellite connection via internet, I might be able to log in and write. Out at sea, communications are not guaranteed, so we'll see. Take good care of yourselves and tell that special someone you Love them. Bon Voyage! November 10 We are HOME. Have been for a week, but I've been too tired or busy to update y'all. We had a wonderful adventure on this cruise and everything went well. Nothing bad happened. No medical emergencies, no jumping off the ship to swim with the sharks, no accidents, nothing. It was wonderful to stop in different ports and tour around. The Panama Canal is huge. There were 9 cargo ships transiting the day we arrived and we went through 2 locks, turned around, and came back to the Atlantic Ocean. No need to go all the way through to the Pacific side. Brian enjoyed his days on the verandah listening to his radio receivers and spent most nights on the chaise outside, listening to stations he can't hear in Virginia. He loved it! We loved having my sister Noreen and her husband Gordon in the next suite and we had meals with them and went on tours together. A wonderful trip with a lot of memories.
You are here...a little blip on the map Brian is in Heaven, enjoying his radio!
Gordon (my brother in law) and my sister Noreen in the back row, Brian and I in front. I continue to feel well, tired and exhausted would be descriptive, but not CF sick. My lungs are just now starting to revolt with increased sputum production, but it's not out of control and I am not any more sob (short of breath), so carry on. We are getting ready for Christmas and having the house decorated. Man, that saps all my energy! We have amazing help to get things done, and I sleep so well after working so hard. While cruising, another grand nephew came along. On Halloween, Caden was born. My niece Stephanie and her husband Alain, just had their first child. Her parents were the ones out cruising with us (my sister) and we hoped she could hold off until we returned home but Caden wanted out. Welcome Caden and Amen for this new blessing. After Thanksgiving Brian and I had a good Thanksgiving. We went to visit 4 houses and had 4 dinners! Neighbors, co-workers and friends had us over and we enjoyed dropping in and having a nibble here and a dessert there. I wish our Thanksgivings were more family oriented, but it is to friends we turn to and celebrate with them instead, for the most part, and for this we are Thankful. Prayers also were said for me NOT being in the hospital this Thanksgiving. Something funny to tell you: Our cats were keeping a round the clock vigil at the refrigerator door. That meant that something was under the fridge. For 2 days non stop, 3 cats were planted on guard, waiting for whatever it was, to emerge. I asked Brian to go investigate, and he did. With a flashlight in hand, he crawled into the low, ground position and poked about with his flashlight, but saw nothing. Still...the cats were on guard. Tucker, Puddy and Buddy KNEW something was there. Well 72 hours later, I saw buddy playing with his fake, catnip filled mouse. Buddy was tossing it up into the air, jumping on it and attacking it. Then Tucker joined it. It was quite animated to see them enjoy their fake mouse. About an hour later, I asked Brian to check on the cats and low and behold.......they were playing with a LIVE mouse!! The mouse they had been tossing into the air...was their catch. A field mouse had come into the house seeking warmth, and surrounded by 5 cats, he hid under the fridge. Bad move. No need to call Terminex because we have the best bunch of mousers ever! Brian bent down to examine the almost dead mouse, picked it up with a soft towel, and took it outside where he laid it on the grass. He was hoping it would recover from it's pounding and pouncing and stagger away, undead. Alas, when I went out in the morning, I could not find it, but I think he made an excellent meal for the many owls and birds we have here. So that is how our cats got their Thanksgiving dinner this year. God Bless us Everyone. After our Christmas Party... We had a wonderful Christmas Party here at Villa Morris Hughes 2 days ago, and I am just writing about it now. I am slowly recovering from the hard work it took to pull it off. We try to plan a grand Christmas open house every year and invite friends and colleagues from work, to kick off the Christmas spirit. This year, 91 people came to our house. My one regret is that I did not spend at least 5 minutes sitting with every single guest to welcome them personally and say Hello. I was just too busy doing stuff. It happens like this every year, but they know I would sit with them all if I could just find the time to sit down. I had special elves who helped: Karen Looman, Donna & Jim Price, Linda, Leah Bush, Austin Butler, and her friend Patrick. These friends pulled my load and helped with the after party clean up. That was the best gift I received...friends who stayed late to help clean up. Amen! When I finally went to bed, I hit the pillow and slept well...until leg cramps woke me up about 6 AM. However, at least I wasn't woken up coughing out a lung, so that was ok. I had many ladies from my church come join us again this year. We had to lock the cats in the garage so none would escape. They were treated to chicken nuggets when we let them out, hours later. Our pool was on parade with the water spouts and fountains shooting streams of water, and the weather was a very pleasant 67 degrees outside. Many people took their buffet plates outside to eat around the pool, it was that nice...and we're talking December 10th! Brian gave tours and showed off, his radio studio, and how he runs the 1920s Radio Network. We had a wonderful time and I look forward to doing it again next year, Lord willing, as long as I am well enough. I am feeling well enough not to have my sights on returning to Duke real soon, and I felt well to host the Christmas party. This was 8 weeks since my last tune up, so I am grateful for answered prayers. I prayed to be well enough to host the party and not have to cancel it for being sick. I am hopeful I can last until December 26th, then I don't care if I have to go in, because it's coming and I'll have to deal with it, but I'd like to share Christmas here at home with Brian, and not be in the hospital. So that is my current prayer request...to breathe well enough to not have to go into the hospital before Christmas. Pray for that, will you? Love from Lori December 13 Today, Brian and I rounded up our 3 Sugar Gliders, Randy, Mousey Mouse and Joey, and headed to the Vet. We had been watching Randy lately, and at age 14 months, he has now become an active male Sugar Glider- in the sexual sense. We have watched him "humping" the other boys in the cage, and not wanting to have a gay glider, off they went to the Vets to get their "stuff" chopped off so they wouldn't be amorous to each other. Sugar Gliders are considered an "exotic" pet, and it is hard to find a glider specialist. There is one in Richmond, and fortunately for us, one just 35 miles away. Yeah!! So off we went with all 3 in their carrier. After meeting the Vet, Dr. Thomas of Great Neck Vet Clinic in Virginia Beach, she took all 3 in and got to the task at hand. About 90 minutes later, she called to say she was done but that she had a SURPRISE! We don't have 3 MALE gliders....One is a female! Well knock me over in shock. Mousey Mouse is Mousette, she is not a he, but a her. No wonder Randy was humping her. Wow. Fooled us...and the breeder who sold them to us! So we brought them all home and looked them over. Mousette got off scot free, no surgery for her. The other 2, well...they are sore and tender down there...for males who have had that part snipped off, they know the discomfort. It will take about a month for the testosterone levels in the males to fall low enough to where they leave Mousette alone, but they are all safe to house together now. In fact, to NOT house them together would be awful as all 3 are bonded together. So that is our news of the day. I am ever thankful I am feeling OK and not planning on returning to Duke shortly. I am hopeful I will be home for Christmas and not in the hospital. Any time after that is fine, but not before. That has been my prayer, along with other special needs I share with the Lord. Good night....Love Lori xoOOxXXo Christmas Eve It's Christmas Eve and Brian and I are at home, NOT AT DUKE. What a blessing this is for us to be home, celebrating the birth of Our Lord and Savior and not be sick and tied to IV drips in the hospital. That was the only wish I prayed for for all of December. I wanted to feel well enough to be at home, not coughing out a lung (or two), at Duke. My wish came true and we are home. While I could be feeling a tad bit better, it is not bad enough for me to be in the hospital, so I'll take it anyway it comes. I increased my oxygen flow last night as I was short of breath, but that did the trick and I slept some. It is nearly time to leave for church. We are going to the Christmas Eve service in about an hour, and taking our neighbor Ruby and Rudy with us. The only thing missing is some SNOW! We would be stunned if we were to have any at all here, this far south in Virginia, but as I am always a Canadian at heart, Christmas just isn't right unless you have snow. I spent 35 wonderful years anticipating a snowy Christmas Eve in Toronto, and I was only disappointed twice, but then it snowed the day after Christmas, on the 26th. As a youngster, I would gather with my sisters around the large front picture window in our living room and watch the snow fall. We had a lamp post nearby, so we always watched the flakes fall in the glow of the light bulb, and Christmas on Livingstone Avenue was always magical. We lived on the crest of a hill, and we had a view for miles around. To see the streets blanketed with snow was so wonderful. Once, when I was dating Brian, I flew him to Toronto to spend Christmas with my family. I had to go outside and shovel snow to get the stuck car out of the snow, and I begged Brian to come out and help me. I needed help, but Brian whined that he was a Virginian first, and a Southerner second, and he was not equipped to shovel snow. I was mad that he was huddled around the roaring fire place whilst I tried to shovel away. I was not that well myself then, but then I got out the big guns....the electric snow blower, and made light work of the task. To this day, I can tease Brian about the winter he woosied out of helping me shovel snow. He swears he is warm blooded and simply could not undertake such a cold chore. My family in Canada got together this week to have a huge Christmas celebration. My sister Brenda made many turkeys, I heard. I heard our family has grown to 32, with 3 new young babies just recently upping that number. I wish I were more in the loop and more involved in their lives, but distance makes me absent from their lives, and I hear snippets here and there about what's going on. I also dearly miss my sister Vicki, who is 3200 miles away, in deepest British Columbia. Vicki, I'm thinking about you always, and praying for you! The mailman just arrived and a surprise came from friends in Bristol, England. Listeners to Brian's 1920s Radio Network, a senior gentleman named Roy Hepworth, has been emailing Brian and trading CDs for a few months now that Roy stumbled onto Brian's internet radio web site ( the1920snetwork.com ). So Roy and his wife Marjorie sent us a huge, big and grand Poinsettia last week, but today, anohter package arrived bearing a copy of Charles Dickens story called "A Christmas Carol". Now once again, I am strolling down memory lane as we had a tradition in the Morris household growing up. That was on every Christmas Eve, father, myself, sometimes Vicki and Dolly, would gather round the TV, have a bowl of popcorn (sprinkled with white sugar on top), and we would snuggle under the blankets to watch the 1934 original adaptation of Scrooge. This is the other name for Dickens' A Christmas Carol. We watched as Ebineezer Scrooge was a miserly old man who gave no meaning to Christmas, and how 3 ghosts came to visit him to show him how flawed he was. It became a show we had to watch every Christmas Eve at our house, and today, Christmas Eve, the Dickens' book from England arrived! I will enjoy reading the hard cover copy Roy sent today and I will treasure it. Thank you Roy & Marjorie from Bristol, England. Oh Wonderful! Tonight, after church, Brian and I shall retire to the theatre upstairs and watch that old 1934 DVD and love every minute of it. I'll be reminded of how my father loved to snuggle up with us to watch it and how comforting it was to have this as a tradition in our house. If my father were alive, we'd be watching this movie tonight, for sure. Oh what wonderful childhood and adult memories I have of Christmas on Livingstone Avenue. Mother baked for weeks on end to get her 50 plus special cookies and goodies into tins and wrapped up for gift giving. What makes my memories so wonderful is that I'll see my parents again...in Heaven. I am told I will know them, and they'll know me, so although I miss them dearly every day, when it's my turn to be called Home, I'll see them again. Amen and what a gift that will be. OK family and friends, time to get ready for church. We pray you will know the peace that only knowing God can bring, and that for those of you hurting over the loss of dear ones, focus on the birth of the babe, it was HE who made eternal life possible. Look to God for your strength. The gifts around the tree are nice, but the greatest gift of all, is the babe who came that dark night and was born in a barn, for You and Me! Merry CHRISTmas, Love Lori XXOOOoooxxxoooxx
*Twas the month before Christmas* Author unknown...circulating on the Internet
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u, Friends.
missioned of our house and here is a glimpse of it. A skillful artist named 
gel. This time I said "no". That I did not think I'd have a seizure and that I felt this is just the usual CF crap doing its job, so I was not afraid to be left alone. I sent him off to work. He tucked me in, brought me a gallon of Gatorade, and told me he loves me. We celebrate our 8th wedding anniversary on April 18th, then his birthday is April 19th. I was hoping I'd be here to celebrate and not in the hospital. Heck...I'd be happy to be alive.
She lost a good friend and her support. She was sad. 
as our cat. My cat. My big white Simon boy. He was almost 19 years old. I got him as a kitten in Toronto when he was born in the house of a very ill lady who died and was found to have a fresh batch of 3, new, just born kittens hiding under her bed. Of the bunch of 3, Simon stole my heart. He was all white and very small, but I fed him well and plumped him up. 
black, named Taylor. They were best friends and always napped together. Taylor is alive and well today. 
o called Pet Cremation Services (757-340-0016) and they came out within an hour to transport Simon to their facility at (get this...) 105 Happy Street in Virginia Beach, for cremation. We tried to dig a hole outside but the ground was too hard, so Brian gave up. We could have left him in our deep freeze over night but I didn't like that suggestion. So we decided to have him cremated instead and set that plan in motion. It's now 11PM and Simon has just been picked up. He was removed carefully and nicely in a manner that was very respectful by Chris Gordon. He will be cremated tomorrow and he will receive his cremains Wednesday. 
4 months ago, we bought a pair of Sugar Gliders. These so called "exotic pocket pets" and are little furry things, with long tails, that sleep all day and play all night. We bought brothers Randy and Andy and we adore them. Andy is the more energetic of the 2, while Randy squeals more, and is shy. Last night, I took my inner cannula out of my trach and set it on my bedside table. Later, we heard it being moved, and Brian turned on the light. Well what did we see? We saw Andy dragging my trach tube around the table, and was licking on it. EEEwwwwwwWWWWWWWW...All those cepacia nasties! He was enjoying the sweet, rotten fermented grape taste my gram negative CF bugs give off, and it was the darndest thing! Here is a pic of the thief in action. (Dr. Randy Garnett would scowl if he saw this). I swear I clean them out before I pop them back in my neck, honestly! Anyhow, we open their cage door at night and let them fly out. They love to climb the curtains and be up high. They eat lots of fruit, sunflower seeds, tuna, meal worms, glider grub, crickets and grasshoppers. 
compared to how I felt early last week, I am a thousand times better today. The retched watery diarrhea has almost subsided and I have stopped vomiting, so I feel better. Brian was so very cautious about everything he touched here at Duke, knowing how easy it is to pick up the Norovirus from most anything. I have never witnessed Brian wash his hands as much as he has done in the last 24 hours since arriving at Duke, so it turned out to be a good thing after all. He does not want to get this sickness as it would leave him quite ill and alone at home to deal with it. With me, at least I was already in the hospital and had nursing care to clean me up. 
Today my nephew Tim came for a visit. I was napping and I heard a knock at the door about 10:15 AM to see Tim gowned and dressed in isolation gear. We chatted for about half an hour then I walked with him to the lobby where the valet brought his loaner Truck to him. Here are pictures of our visit. It was so beautiful and warm outside, I wanted to stay and enjoy Gods new day, made just for me. I continue to do well and the plan is for me to go home on Tuesday. Amen. I am feeling better and know it's time to go. The antibiotics have done their job. 
e admitted. My lung bugs need to be beaten back into subservience and my face is swollen from what I think is an allergic reaction. I don't recall what I came into contact with but this is awful. I have blisters over my fingers and in every crack on all 10 digits, with a weeping lesion on my right elbow. A moment here to pause and be thankful I have a trach because while my eyes are tightly swollen, so should my throat be too, yet the trach is stenting it open while the rest of me is swollen. So chalk another praise to having a trach. Here is a photo. Not pretty, eh? My eyes are like little slits. I look Chinese. 
h day and knows that I like a banana with my breakfast tray. Service with a smile! Transferring my CF care to Duke really has been a blessing to us. Sure, it's a long ride to get there, but it is worth it when it comes to CF care and knowledge. They know what they are doing and how to treat the CF bugs. For emergent things, I'd consider going back to Norfolk General, but for CF tune ups, it's off to Duke we go. I hope Dr. Kussin never leaves, or retires from Pulmonary medicine at Duke while I am still alive. He rides me when he has to get a point across and always speaks his mind, but it has been good for me to be managed by his analytical approach from a "New York state of mind" with me. Here he is. Worth a Billion Bucks to me! 
learning new things too. What a gem she is. Here is a pic of us two, in the lecture hall. I spoke with Laird while I was in St. Louis and he was out on his motorcycle touring the mountains in Idaho. He is always out in the open air, doing awesome things with his second set of donated lungs. He really did, get his breath back. 
lehills in a tiny corner of my backyard. You know, the homes for moles. So now we have moles. Yuk. I watch them com up from their burrows and grab the bird seed that has fallen on the ground, and they grab it up and run back to their hole. They are ugly looking things, and they have no tail. This is what they look like. They are quick and fast, and I don't like them. So I'll have to go get some mole stuff to kill them. They are about as long as your biggest finger, and the owls out here like to eat them, but I want them gone. Peta might arrest me for killing them, but then, who cares about Peta? They suck. We call them "People Eating Tasty Animals" in mockery of them.
rams, making calls and filing things, that I had to fight with the cats to find space on my desk. They love it when they can join me in my home office and lay all over my paperwork. It makes typing difficult as you try to reach over their furry bods to work, but hey, it made for some good bonding time. Here is a photo taken today while I was working at my desk, surrounded by 3 cats.
When our housekeeper comes to vacuum, I wanted them safely in their cages and not fall victim to a powerful Dyson vac with cyclonic action. So I blocked off their entrance to the mysterious inside world of the bedside couch and now use meal worms as a lure to get them into their cage. We buy meal worms at the local pet store. They cost 99 cents for 50 and I buy 200 each visit. I carefully transport them home in a tupperware container and then feed them to the "rats". THEY LOVE THEM! 
to pay with and provide lots of play time outside their cage. The love to be free in the bedroom, roaming about without being hindered in a cage. We put towels under the door so they can't slip under, something they have done twice and ended up in another part of the house! They are nocturnal animals, so they play all night and sleep all day. That means you are up and awake with them too! They come to Brian's command and jump when he says Jump. They let him pat them and only one, Joey, likes to bite. It does not make you bleed, but he should not be biting. Still, we have found a diversion with these pocket pets and have both come to enjoy their antics and personalities. You can't buy then just anywhere and we hadn't heard of them until about 10 months ago. So keep your ears open for news about Sugar Gliders, and believe me, they are a ton of fun! With Love, Lori 
. Don't know where that name came from, but it's a girl. You couldn't tell by the name, eh? Neither could I. Despite the odd name (it's Gaelic), she is healthy and does not have CF, so all else doesn't matter. She is healthy and BEAUTIFUL! I have 16 nieces and nephews and 4 grand nieces with another in the oven and due mid October, this time a boy to be named Kaeden. Whew. Our family is growing. Another Maple Leaf in our Canadian family tree. Welcome Teaghan! Love Great Auntie Lori 
and we met 2 years ago in Pulmonary Rehab at Duke. While there one day, they announced that she received her donor lungs that night and everyone clapped and shouted praises! Rita had some very rough spots to get through, but now, nearly 2.5 years after the gift of a second chance to breathe, Rita is glorifying God and loving her husband and family for this precious, second chance at life. She was on her way to Transplant Clinic today at Duke and came to see me. She also smuggled me some Halloween Jelly Belly candy. Yeah Rita! Here is a photo I took of them both. They have to mask and gown due to my CF cooties, and especially Rita as her immune system is so fragile due to the meds she must take to keep from rejecting the new lungs. This will be her task every single day: to keep infections away. Thanks Rita & Keith for visiting me today. 
that was sent from internet listeners of Brian's 1920s radio network in England. He has made email buddies with an avid fan named Roy Hepworth and when he read of my admission to Duke again this time, he and his wife rallied up their Visa card and sent me these flowers! We have never met, yet they listen to his station and have a fondness for reaching out and sent me a "Feel better soon" gift. Thank you Roy & Marjie for once again, surprising me with this beautiful basket of Golden Yellow flowers. Here is a photo my nurse took. All along I thought Brian sent it to me, but not this time. His fans sent it:. You can listen to his station by going here:
s tune up before we venture out on the high seas soon. One issue is that I sure retained a lot of water. My hands and ankles were always swollen, and a good whopping hit of Lasix helped diminish that, but this is new for me....to need a double dose to pee of the excess volume. Hmmm. So in this picture, I am a real fat pudgy wudgy cystic. Got Prednisone? I might not have started out on the right foot in Fort Lauderdale had I not come to Duke first. Thanks Dr. Kussin for bringing me back in. 
