January 4, 2005

Blessed New Year to All! My first entry for 2005 and already, it’s pessimistic. My appointment on Thursday at UNC to meet with their CF specialist has been canceled. It will be rescheduled sometime later, when they get back to me with a new date. So I’ll drive back home to Virginia until such time as I come back to Chapel Hill to see them. Hey, it’s not as devastating as hearing you have been kicked out of the transplant program. Which brings me to the looming reality of having to return to Norfolk General to knock on their door as I am not doing well. That’s the best option I have, seeing as I will not have met with the new UNC CF guys to have established a rapport with them, and jumping into the pot with all my issues is a lot to handle when you don’t know me. Which is where Dr. Randy Garnett comes into the picture. I trust him. You never know who will be on call when you go to the ER--it’s truly, hit and miss medicine. I have not gone to the hospital when I should have because of who was on call. You call their answering service and when you hear who is on call, you make a decision whether to to go to the ER or to tough it out another day. Yes, they can all write the standard admitting and ventilator orders, but I know who I don’t want calling the shots about my life, verses one who I prefer. It’s that simple.

Brian and I had a nice weekend moving into the new house in Chapel Hill, NC. I used my GPS unit to navigate getting here and to find Wal-Mart. The house has full utilities and functional water, despite the water chaos on New Years Eve, but the fireplace still has a gas leak and the 2 showers on the second floor just trickle out, so I’ll have to put a work order in for that to be fixed too. The local oxygen company came and set me up with everything and the locksmith came to re-key all the door locks. We met the neighbors and then Brian had to head home to Chesapeake today, leaving me here until I go home on Friday. Now that my UNC appointment is canceled, I’m free to go, but will stay and linger a little. Melissa moves in this week in readiness for her studies at Duke. She is a genius, one of 13 “Best of the Best” whom Duke chose to invite into their graduate school of Nursing, who will do so well in their Anesthesiology program.

Today would have been my mothers 78th birthday, but she died in November. Happy Birthday in Heaven, Mother!

January 6, 2005

Last night Lori Jernigan slept over so she would be at Duke today for her Transplant Anniversary. February 19th makes it 5 years since her living related double lung transplant for CF. Amen for the miracle of her life. We treated ourselves to Valet parking and did the rounds at Duke. Blood, labs, PFTs and a chest x-ray, then on to see the doctor. Great report! Lori and her husband Jason are going to celebrate by going on a Caribbean cruise in February. Yeah! 

I am heading home tomorrow morning to Virginia. Apparently the kitties really miss me. They have sent me kitty e-mail asking me to come home. I’ll crawl into my bed, and surround myself with 2 of the 6 furballs and bask in their purrs of affection. I’ll keep their fur out of my trach. I also am going home to start IV antibiotics, as I am not feeling as great as I felt 2 weeks ago. Just tired, sleeping a whole lot, coughing too much, intermittent fever and chest is rattling. UNC faxed my sputum sensitivities to my home in Virginia and I’ll see them tomorrow. These results are from the sample they sucked out of my lungs in December, so it’s called “Lung Gold”. They said I cultured my usual bugs, MRSA and Cepacia.

Today, I signed up for Pulmonary Rehab, starting in March. It’s a 4 week session, 5 days a week, 4.5 hours per day, and they will really work you hard. First you do an evaluation, then they tailor the program to you. When you graduate, you can opt to continue in the Maintenance Class. I want to return to work and this would be a good workout for me, to build endurance and strength, because sometimes a dead body is on the second floor of a dwelling with a lot of stairs to climb, and I have to be able to get up there to do my job. Bring it on!

January 11, 2005

Today my sister Vicki celebrated her birthday! She is just 2 years, 5 days older than I, so that means in 5 days, it’s MY birthday!  #41. I’m pushing the CF stats higher to have survived another year and to “grow older”, as the average norm for CF is dead by age 33...but then again, I have always been outside the norm.

Brian and I went to see Dr. AJQ today and his opinion was that I am not doing great and my chest is junky. If things are not greatly improved in a few days, he might admit me to the hospital. I said “No thanks...I’ll pass”. We agreed to add another IV antibiotic in the hope that it will help. It is called Zyvox. I’ll up the Prednisone for 3 days, to see if it helps. The tracheal aspirate results from UNC show I have MRSA ⁺⁴ and B. cepacia ⁺¹. Nothing new here. I am thankful the cepacia is only a ⁺¹. Plus I have a few sensitivities, so I am not out of the ballpark yet. My previous synergy results from Columbia University showed very resistant cepacia, sensitive to only 1 drug.

I have nasty sputum and I am just plain tuckered out and sore. Sore from coughing too much and tired keeping the antibiotic infusions on an every 6 hour schedule. Yet...better to be tuckered out, sore and tired at home in my own bed, than to be admitted to Club Dead. Plus, we have a small birthday thing planned for Sunday afternoon here, which I plan to be at, cuz I’m the birthday girl! My oxygen saturation was 92% when checked, and that was on 50% oxygen. I’ve had it much worse, so at 92%, I’m not worried. Now at less than 90%, I don’t drive my vehicle, so then I’m in trouble.

I have plans to be in N’Awlins in February for a forensic conference and I have to pick the workshops I’ll attend, so I can do that tomorrow and send in my registration. I’ll watch a movie or two and nap. Let my body rest and heal. I am glad Brian goes with me to my appointments as I need him to be a second set of ears to hear what I miss. Thanks Honey! OK family.....more later.

MORRIS, Len - July 23, 1917-January 14, 2001   Dearest Dad,  it's been 4 years since you went "Home to be with Jesus" and what a happy time it has been for you to welcome mommy home to Heaven with you just 2 months ago. As I grow older, I see the wisdom in all you tried to teach me. Why didn't I listen more when I had you here on earth with me? I miss you tenderly, every day. Please keep your ever loving arms around me and take care of both mommy and Kevin, as they are new to Heaven. I thank God always for the Christian father you were who loved me dearly. -Forever my daddy, until we meet in Heaven, Love your #6 Daughter, Lori.

January 19, 2005

I’m home. Another birthday spent in the hospital. This time I was in and out lickity split. I was very tired and had zero appetite, plus my sputum was out of control. I was met in the ER by Dr. AJQ, who admitted me to the ICU. Got the infectious disease doc involved and she tweaked the IV meds. I went in on 3 IV antibiotics, but came home on just 1 IV med, and 2 oral meds, so I am pleased with that as it allows me more time to sleep. The Doxycycline pill is so very rough on my stomach. Another day of feeling kicked in the guts and I might stop taking it.

My birthday party didn’t happen but maybe down the road we can squeeze it in. Just being home is the best present, as I very much dislike being a patient. I heard from all my sisters on my birthday. Brian bought me a red rose and some bath and bubble goodies. My pal Krista, the Respiratory Therapist, brought me in a birthday cake. She and her husband Gary, work at the hospital, and Gary stayed with me in the ER and Krista did my nebulizer treatments and chest physio, then spoiled me with a vanilla butter cream cake. Thanks Krista!

I have stayed inside all day and feel edematous, so I swallowed more Lasix to pee off the fluid. I have caught up on the bills and important stuff needing my attention and I will crawl back into bed shortly. I did not see Dr. Randy Garnett at all this admission, instead trusting Dr. AJQ to listen to me. He did.

January 28, 2005

I’ve had a wonderful few days of wellness and wanted to post this as a Praise. It’s much easier to complain when things go wrong--we all do it--but I said to Brian a day ago how perfect Monday through Wednesday seemed to me. I felt well enough to go to the monthly “Christian Women of Chesapeake” Club, where ladies meet, greet and eat for a 2 hour affair. I filled up my portable oxygen system and went. Also, I finished the IV antibiotic, Zosyn, on Wednesday, then heparinized and pulled my Medi-port access free from my chest, for now. I stopped the wretched Doxycycline a few days ago and I am certain it is that which accounts for me feeling much better. The Doxycycline was so terrible on my stomach, that I even tried taking it with food to lessen the nausea and pain, but my guts and stomach were still crampy. Indeed, I felt well enough to go out tonight to a Big Band concert in Norfolk, featuring a rendition of the music of Benny Goodman and his 1938 Carnegie Hall concert performance. I filled up my portable oxygen and off we went. It was a good time to be with Brian, enjoying something he is so very thrilled about--Big Band. His internet radio station is WBDH Radio (The ‘BDH’ part are his initials). His stations philosophy stands for all that is Right with America and despises the queer, abortion loving Liberal Lefts who want to allow homosexual marriage into our culture as just another “normal” lifestyle choice and who want God taken out from every public venue out there. Democrats Suck.

Click on the Jumpin’ Radio to listen to Big Band at WBDH Radio. 

I called my sister Vicki and together, we are going on a cruise to the Bahamas in October. Just the two of us. A Carnival cruise from Norfolk to Nassau for one week. I did this 2 years ago with my friend Donna and had a wonderful time (despite persistent hemoptysis) and so Vicki and I will also have a great time just hanging out together. She lives 3200 miles away in the frozen north of Canada, and I haven’t seen her since our father’s funeral four years ago, so we are due to have some quality sister bonding time together. Did I mention we are leaving Brian home? He does not want to go. He says cruises are floating Salmonella factories, so he will stay home with the cats. Since I am indulging Vicki and I with this cruise, I knew Brian ought to have something he wanted. So I finally gave in and let him buy a professional drum set. Brian had one, long ago but gave it away due to lack of space, and he really wanted a much better set this time. So he shopped around and on Wednesday night, came home with his car loaded with the set. He put it together in his studio and I saw the cats take off in terror when he first walloped the drums. They were terrified! So it is in his studio and yes, he is trying to move it into the main house, into the game room, but I am firm it is to be left in his studio where I am less likely to be forced to hear him banging away at it than if it were in the house, with the sound bouncing off every wall and through the vent system. He got his drums, I have some quiet and sanity as long as he keeps it in his soundproof studio.

I STILL have not heard from UNC about rescheduling my CF clinic appointment. They canceled my appointment for January 8th and have not called to rebook me. Wonder why? They know we are anxious to have them offer suggestions to better manage my CF and both Dr. Randy Garnett and Dr. AJQ are long past the end of their ropes when it comes to dealing with me, yet, nothing from UNC. Maybe I have to be the meanie and bother them again....Here goes....

Am excited about starting Pulmonary Rehab at Duke March 14th for 4 weeks. I’ll stay in Chapel Hill for the whole time at my other home there. More later....

February 3, 2005

Great news! I met with Dr. Lara Dimick yesterday, and she agreed to remove my feeding tube and replace it with a low profile, Mic-Key button. This means instead of having this ugly, long, 12 inch, dangling white tube protruding out of my guts like I have now (photo below), I will get a tiny “button”, which is like a flip top pop opener, so that if I need to be fed down the road (when on the ventilator), I have a viable place to “plug me in” to feed me. This is so wonderful to finally, be rid of this nuisance tube after nearly 3 years. Here is a sketch of the button. I will have it put in under local anesthesia. Dr. Dimick assumed I would have it done as a Day Surgery procedure at the hospital, but I said I preferred it done in her office under local anesthesia, and she agreed. I don’t like going to the hospital for things that can be less invasively done elsewhere. No date yet for it as we are waiting for the $205 button to arrive. My friend Donna, will be there to hold my hand as I writhe from the pressure and pain. I’ve had it done 3 (or is it 4?) times before, and it is very, very painful, but with EMLA creme topically to freeze the hole, then local infiltration with 2% Lidocaine block, add some Dilaudid to the cocktail, and in short time, it’s in and done. I get a lollypop for being a good patient and go home to rest for the day.

I also had a nice lunch with my colleagues from the morgue and we talked shop and about life in general. I enjoy going to lunch with these friends and they always make me happy. I am working with my bosses to integrate back onto the call schedule so I can return to work, one of the pleasures in life I truly enjoy, and miss...death investigation and Medical Examiner duties.

My sister Vicki and I are dreaming and planning our cruise agenda and she wants to do a Dolphin Swim in Nassau. She will have a great time doing this while I’ll do the more sedate (“I won’t drown”), Dolphin Encounter, in just 3 feet of water, while Vicki will be romping out in the ocean with her assigned Dolphins. Go Vicki, Go Vicki. We are going to stay at the Atlantis Resort when we dock in Nassau and have a wonderful time together being sisters.

Vicki is apprehensive about my health and scared she might be called upon to do nursing duties. She is afraid of blood, sputum, fractures and injuries. She has always had a weak stomach when it comes to hospitals. Rarely would she come visit when I, my father, or sisters were in the hospital. I tried to reassure her that I’ll plan to be the best I can for the cruise and that if I am not well, I won’t go. I’ve learned that lesson already with Dr. Randy Garnett when it comes to me going on a cruise. You can’t jeopardize the whole ship and involve the Coast Guard over your little (foreseeable) emergency. We will plan for the best and expect it to happen. We are both very excited for this to happen in October.

February 8, 2005

I had an appointment today with Dr. AJQ and it was OK. He thought I was congested and full of rhonchi but my oxygen sat was 99% on 6 LPM of O2 and I actually looked pink! I will increase the Vest sessions so I pound that junk right out of my lungs. I call it my ‘Wak n’ Hak’ session. I will drop the Prednisone to 25 mg and hold it there until I see him next. I brought up the issue of night time BiPap at home and Dr. AJQ was not supportive of it for me. I do well on pressure support ventilation (PSV) when I am in respiratory failure, and the only way to provide PSV is to be assisted by a ventilator, allowing it to do the majority of the work of breathing for you, which lets you rest your thoracic muscles a bit. To do this at home, would mean to be on a ventilator at night, which he said “No” to doing. I am looking into rigging a Respironics BiPap Bi-Level ventilator so that PSV can be delivered to my trach, not via the mask or nasal setup, which is how noninvasive home BiPap is set up. Make it invasive, by connecting it to your trach, and now this piece of equipment becomes a “ventilator”. So for now, each time I am in respiratory failure, it’s back to the ER to vent me. This upsets me as the device is available for me to do this at home, foregoing the hospital. But this also is a sticking point Dr. Randy Garnett had a year ago about this same issue”...If we allow you to vent yourself at home, Lori, we’ll never see you again because you’ll do everything for yourself at home, and NOT come to the hospital when you need to be here...” Point taken well. But that was last year, when I was active on the transplant list and would use the home BiPap/vent as a bridge to transplant. Now that I am off the Lung Transplant list, I wanted AJQ to reconsider this idea to provide better comfort measures for me at home. Nope.

I am getting my Mic-Key g-tube button next Tuesday. I am pleased this will happen and I’ll be able to rid myself of my current g-tube and go with a very low profile, flush to my skin, button. I had originally wanted the whole g-tube removed completely, and pushed for it to happen, but UNC said to keep it until after transplant, but with that now not ever happening, I asked Dr. Dimick to remove it. Actually, I was going to remove it myself, and when I told Dr. AJQ this, he asked me to please call Dr. Dimick before I did this on my own and consult with her. I did, and we decided to keep the tract patent (open) for future needs down the road.

Then a few days later, I’m going to N’Awlins for a forensic conference. 8 days in the Big Easy having a fun time with CSI types (like myself) and rooming in with my boss, Leah Bush. She is presenting a case paper entitled, “The Dangers of Dumpster Diving: Deaths Associated with Garbage Collection in the Tidewater Region of Virginia”, by Leah Bush, MD and Wendy Gunther, MD. What a good time is in store for me (us). I’ve arranged for a local oxygen provider to set me up with liquid oxygen in N’Awlins and have arranged flight oxygen. Neither of these expenses are covered by my medical insurance, so it’s pay out of pocket for everything. The liquid oxygen costs me $400 for the week, and the in-flight oxygen is $150 each way, or $300 return. You have to be rich to afford this and I travel frequently. I have 3 more trips on the 2005 calendar.

Tomorrow I’m lunching with my friend Krista at Don Pablos and then on Friday I’m lunching with my friend Shannon, who just returned from a Disney cruise and will tell me all about it! Next pulmonary appointment is March 11 with my favorite doc, Randy Garnett.

February 12, 2005

We recently purchased a new TempurPedic Sleep System. It is the fully adjustable model with a split King mattress with built in massage. Brian says it’s a hospital bed without the hospital. We are enjoying more comfortable sleep.

I finish all my antibiotics this Thursday and in good time because I fly to N’Awlins Saturday, to party in the Big Easy. Actually, it’s a forensic conference (American Academy of Forensic Sciences) and I’ll be attending workshops and “getting more hands on knowledge”. Brian stays home and I’ll be gone for the week. This is an annual event that I look forward to each year. I am feeling well enough to go but first, I get my new Mic-Key g-tube button Tuesday, then pack for N’Awlins.

February 16, 2005

Today, I got a new low profile gastrostomy button, called a Mic-Key button. Yeah! It was far less painful than the previous ones we tried and I am in awe that it didn’t hurt terribly. Dr. Dimick froze the area on my stomach with 2% Lidocaine with Epi and in it went. The worst parts were the three needle sticks to freeze the area, but after that, it was painless. My friend Donna Price went with me so I could squeeze her hand and not flinch when Dr. Dimick was doing her stuff, but it was very minimal pain, yet I still needed Donna there and really appreciate her help both days bringing me home. Thanks DP! My cute little button is neat. Here are the pics of my adventure today:

Lori & Dr. Dimick Ouch!! That really hurt!!          All better now. Thanks Dr                                  Dimick

February 17, 2005

Today I had the honor of addressing the second year medical class at the Eastern Virginia Medical School on the topic of Cystic Fibrosis. This was at the request of Dr. Gunther who spoke before she introduced me, on Medical Genetics. Dr. Gunther had a very amusing PowerPoint presentation and she has a very laid back, collegial style of lecturing to the students. I enjoyed listening to her as I waited for my turn. It went well, and my hope is I can return again next year and do it again, with a fresh batch of med students.

My Mic-Key button of yesterday gave me no problems today at all. In fact, it is a remarkable device and I am very excited about it. No pain at the site, just some redness and a bit tender, but nothing to generate even a small plea eliciting any sympathy. It went great. Thanks again, Donna and Dr. Dimick. To close, all my antibiotics ended today and whew! Glad that is over. Next stop: N’Awlins!

March 3, 2005

I had a wonderful time in N’Awlins! The vibrant city, meeting my friend Billy McCaskill after 14 years, good food, interesting forensic workshops and the company of my boss, Dr. Leah Bush, made the trip awesome. Billy and I last saw each other 14 years ago at CF camp, where we were both counselor’s to kids also with CF. Since then, Billy has been given the gift of life from a young man who died and whose family agreed to donate his organs. It is almost 5 years now since Billy received these precious, pink, healthy lungs. We spent time in N’Awlins shopping, eating, doing a cemetery tour and taking a mule and buggy ride. I also went with Billy and his father to his transplant  appointment at Ochsner Hospital and got to meet the Lung Transplant team. The Director, Dr. Vincent Valentine was gracious to spend some time talking to me about my “transplant issues” and gave me some valuable advice.

I attended a workshop in Homicide Investigation and enjoyed many educational sessions all relating to forensics and death investigation, which will be helpful when I resume my job in May, for the Office of the Chief Medical Examiner in Norfolk. I also had a graduate alumni get together with faculty from school and sat and chatted with Dr. Henry Lee and his wife Margaret. I was a student of Dr. Lee’s, taking 3 grad courses under him.

I hung around most evenings with my boss, Dr. Leah Bush, and most nights, we took a shuttle into the French Quarter and ate and walked. It is a total party atmosphere there and way too much booze everywhere. Royal Street had tons of art galleries and I liked browsing in the windows. Leah and I also went on a Ghost Tour at night. We were haunted with stories of famous N’Awlins hauntings and it was a nice thing to do, although I was so tired and tuckered out, I could have dropped into any available grave, just to rest.

We also bought a bus pass and spent 3+ hours riding the trolley’s all over N’Awlins. That is a cheap way to see so much more of the city. We went from ghettos to gardens, and saw many cemeteries along the way. We had a ball doing it!

Dr. Henry Lee, wife Margaret and Lori, chat over cocktails at the American Academy of Forensic Sciences conference in N’Awlins, 2005 Lori & Leah on the St. Charles trolley in N’Awlins

I also took time from all the fun to actually learn, and attend interesting poster presentations and discuss forensic ideas. The exhibit hall was full of companies plying their crime scene/forensic products and you always see the neatest things there! Next year, the conference is in Seattle. If I am well, I’ll plan to go.

It was good to come home because no hotel has a bed as comfortable as your own bed. Brian missed me, and I missed him and the kitties. OK family, more later.

March 10, 2005

Tune up time. I’m home now, after a quick admission to clear up my CF nasties and to start on the right antibiotics. I was admitted last week via the ER and at that time, it was decided I’d go on the ventilator for a short time, but I protested, saying I didn’t think I needed it. I asked the ER attending to call Dr. Randy Garnett and to let him call the shots. He agreed I could go without being vented, but I still had to go to the ICU. Not too bad, as they keep their eyes on you there, better than what you would get on the floor. I then went to the Vent Pod, a step down unit for people who have vent issues and such, and they were kind to me there. I’ve been there a few times, and have horrid memories of the stark isolation in the gloomy unit without any natural sunshine or the ability to discern night from day. But my hero came in the form of Dr. AJQ who discharged me yesterday on minimal meds-just Zosyn and Cipro and told me he wanted me on house arrest until I see Dr. Randy in a few days.

I took a walk around the hospital with a nurse who monitored my oxygen saturations and the numbers could have been better. I dropped down to 81% O2 saturation about 4 minutes into the walk and had to crank up the flow rate to 8 LPM to pink me up again. Eventually I climbed back to 89%, then after resting for 5 minutes, I was back to my normal reading of 94% on 6 LPM. No new surprises here, but I remain hopeful when I start the Duke Pulmonary Rehab program next week, I’ll leave in 5 weeks with better numbers and better conditioning.

My pal Shannon was also in at the same time and we visited each other, cautiously. She was on floor 5 and I was on floor 2. She had the nicer room, by far. We kept one another company in our misery and vowed again that CF would never break our friendship apart, even when hospitals desperately try to segregate those with CF from contact with each other, over fears of germ sharing. So now, I am home, catching up on snuggles with the six furries, paying bills and answering 406 e-mails, and having a grand time napping and doing nothing. I really have no complaints, as things are just plodding along and I am happy. Will write more after my visit to Dr. Randy Garnett in a few days. Cheers!

March 11, 2005

Today I had a check up with Dr. Randy Garnett and my take on it is that it went well. Brian went with me and it was nice we seemed to agree on things and got along nicely.

I’ll begin to taper the oral Prednisone in a few days to 30 mg and then down to 20 mg slowly. I’m infusing IV Zosyn and on oral Cipro, until March 24th. I’ve been having some minor hemoptysis, but it’s really not an issue. Dr. Garnett hates that I just pop a clean inner canula into my trach without ever giving it a second thought and he is a bit miffed that I just casually reach into my pocket and swap out a dirty canula for a clean one. He suggested I keep one or two spares in a zip lock baggie cleaned with alcohol, rather than grabbing one from my jeans pocket or knapsack and swapping it out. Germs, germs, germs.

I am heading down to Duke in a few days to begin their Pulmonary Rehab program for 5 weeks. When I was listed for lungs at UNC, I checked out their program but felt the Duke program was better, so I signed up in January and begin it next week. Both Shannon and her sister Lori, did the Duke program. I am not at all happy with UNC as they still have not rebooked my canceled CF clinic appointment from January 6. Nothing. Just endless e-mail promises that I’d be called soon, to be seen in the CF clinic, and then nothing ever happens. Time to look elsewhere. They could have been very proactive in my care, but were reactive instead.

UNC ran my blood through their DNA lab to find (verify) my CF mutations. They tested for just 32 possible mutations out of the 1300+ out there. They came up empty. DUH. Nothing. No shock or surprise, as it took the NIH multiple tries to validate my TWO CFTR Mutations previously. Dr. AJQ also tried to confirm my same, CF Mutations through Norfolk General, but they don’t do this test, so Norfolk sent it to LabCorp. LabCorp ran it through for 25 CF Muations and nothing. LabCorp then ran it through their extended mutation panel of 39 mutations. Nothing. Uh oh...Looking negative for Lori. Then LabCorp contacts me and says they want permission to send the blood to another lab in California, one that can screen for 1000 CF Muations. I agree and sign the consent. BINGO!! 2 CF causing mutations. Both rare. In less than 1% of the population. This result confirms the results that Health and Welfare Canada ran on me in 1997 when they hit upon my 2 CF Mutations. Now how is it the Canucks are way ahead of the Americans on this? But somehow, this does not convince Dr. AJQ I have CF. Hmmmmm. Let’s see now kids: 2 positive sweat chloride tests (98 and 102), 2 CF Muations, Pseudomonas aeruginosa and Burkholderia cepacia from bronch washings, and still they scratch their heads. Now I am not skinny and deathly, like 85% of CF patients. Instead, I am one of the 15% who have pancreatic sparing. It happens. Plus, I do not have clubbed fingers, common to 85% of cystics. So I can see a few reasons for them to question, but the proof is in the science, which doesn’t lie, and so they need to trust their instincts and go with the empirical evidence. I do not want to have CF for the jollies of having a pathetic disease or for sympathy. No way. It has taken too many things away from me now, that one would not dare ASK for CF or even lie about it. Now that would be sick!

I found out something new today: UNC is of the opinion that my bizarre blood antibodies (that took me off the transplant list) were faked by me. That I did “something” to skew the results to make them totally bogus! Yeah, right. Game over. They suck. They never even talked this over with me, but instead, concocted a story to have more blood tests run from a peripheral puncture this time, rather than from my Medi-port, thinking I might have fed tainted blood into my Medi-port with bogus antibodies, just for sympathy. So they re-ran these tests, and got the same damned results---again. But yet, they have not said anything to me to apologize or to admit they were wrong. Instead, they asked if I wanted to see a Psychiatrist for help with my “issues”. This is not how I wanted it to end, but I know their usefulness to me is over. I will no longer be their puppet, waiting for them to pull my strings when it suits their needs. So sad it ends on a negative note. So sad. Just leads me back to the safety of the Lord’s understanding and I know that HE looks after me and nothing negative these medics can say or do, can destroy my faith. God is the Great Physician.

I’m feeling well, feeling strong, and am sleeping through the night. OK family....more later. Your sister, Lori xoOX

March 16, 2005

Hello from Chapel Hill, NC. Today was officially Day 1 of my Pulmonary Rehab program at Duke and I am hopeful it gets better. You see, it was just a huge waste of time sitting around for 3 hours reading over paperwork and going over rules. We never even got to walk a lap or do anything remotely related to exercise! That will all change, I am sure, and I just want to “Bring it On”!

Sadly, I am delegated to a group where I am the lone member, the so called “Cystic Social Outcast” group. Because I have issues with MRSA and B. cepacia, all in this special, tight knit group (just me) are isolated from contact with the others. I had to sign a contract about “Contact Isolation” and I had to promise not to cohort with the other people in the gym. I was issued my very own special tote box of goodies (supplies) of rubber gloves, Kleenex, surgical masks, Blood pressure cuff, zip lock baggies, Windex spray and paper towels, to be brought with me every day I am at Duke. Plus I brought my own Pulse Oximeter which is great cuz they won’t let me use theirs. Upon entering the gym, I have to glove and mask, and then trade off my oxygen for one of theirs. My liquid oxygen is then bagged into a green trash bag and put aside from all the others. I use their supply of liquid oxygen the whole time, then switch to mine when I leave. No sitting or mingling with the other participants. I have a designated corner to sit in away from everyone else, so I can keep my cepacia bugs to myself. This is more stigmatizing than anything. It’s as though I have a big sign screaming some horrific thing like having AIDS or worse, above my head. Funny thing is Norfolk General doesn’t do much about it at all. Yes, they sometimes get on the righteous bandwagon and isolate me for MRSA, but not for B. cepacia. They could care less about my cepacia at home, but not here at Duke.

There are 6 other ladies in my group, all over age 65! I did see 3 Cystics, but they are in a different class than I am in. They were on the mats doing exercises with those TheraBand stretchy bands. The pool is off limits to me as well. No germy people allowed there, heck no!! I could have bounced around the shallow end, and held onto the rail, but my B. cepacia precludes even that. What a smack of reality. At home, they don’t care about it, but to be fair, that’s because there are no other Cystics at Norfolk General. The few that are in the area, all go to Sentara Leigh and most come down to either Duke or UNC for care, or go to UVA in Charlottesville, VA. But I can count 3 others aside from me who have once in their lifetime been at Norfolk General. OK...so here I am a Social Leper, and a blatant one too. Nobody else in the gym has a mask and gloves on, so I stand out and it’s not a nice feeling. At home, nobody cared, now here, I stick out like a sore thumb. OK Lori....get over it, right? I’ve had my boohoo so now just quit whining and move on, right? OK...done.

The drive to Duke is 14 miles and 22 minutes. I pass UNC along the way, which is just 3.6 miles away. You are either a Tar Heel or a Blue Devil here. No mistaking this place, it’s a college town with tons of Tar Heel blue everywhere. My house here is fine. I came to it and it was nice and welcoming to me. I opened the drawers in my bed room and all my clothes were neatly tucked inside. I felt as though I was home. Since I have this house until the end of the year, I ought to get some valid use out of it, eh?

I am infusing IV Zosyn until March 24 when both it and the Cipro end. Then I can pull my lines out of my chest and be free of any IV access for a while. I am feeling strong and well, and passed my physical today at the gym. The RT, named Mark, offered to do CPT (chest physio therapy) if needed and I can also have a PRN Albuterol neb if needed. Cool. My sats on 6 LPM were 92%. 2 days ago, I did their 6 Minute Walk Test but I don’t know what my results were. I did complete 3 laps of the track under supervision and with continuous oxygen saturation readings throughout. I am sure I passed. At least I didn’t cop out and wimp out of finishing the 6 minutes allotted to do it. Yeah Lori!!

Shannon will be coming down at the end of the month for her Transplant clinic appt. and she will stay here. She is going to be bronched so I’ll be responsible for getting her here afterwards and letting her rest. It’s her “Happy 3rd Lung Transplant Anniversary Bronch” at Duke. Maybe that night, we’ll go to Macaroni’s Grill, a place we both like. OK family, friends and all others, that’s my recent news. I’ll write more when interesting stuff happens. I am excited that my family will come to Chesapeake to visit this summer. I don’t get to see them enough, as they are ALL up in Canada, with just me down here in the States. So seeing them will be even sweeter as absence makes our hearts grow fonder. Love from Little Lori  OxXo

March 18, 2005

Today began as a beautiful day. The sun was shining and it was warm here, in Chapel Hill, NC. I got up, infused my IV Zosyn, did my Vest therapy, and went to Duke for the pulmonary rehab class. But I left the class early, mad at the rules, mad at the isolation. You see, because I have these hard to get rid of lung bugs, I am isolated from all the others in the gym. My own seat, far away from the others, and other things that I wrote about in the last post. Well today, for some emotional reason, I was on the brink of crying and I was very emotionally labile(?period coming?), so when I was doing the floor exercise class, I was all tucked away in my corner, away from the others, so I took my mask off. And I enjoyed the freedom. No hot, soggy mask clinging to my parched lips, and I really enjoyed it. Until...until....until I was approached by a staff member and told to re-mask again. I protested, that there was nobody close to me and I was not hurting anyone, but still, the rules exist. So in a huff, I got up, cleared my mat area, and left. Drove home. Cried all the way home too. Cried that CF is such a mean disease to be able to wield control over me. Cried that I felt so stigmatized and forced out into the open for all to see and question...”Why does SHE have to mask and glove”? I cried over the way I felt, that me, a social butterfly, had clipped wings. I cried that my father wasn’t here to hold me and tell me he understands, and to hug me as only your father can. Cried that Brian could not be here to hold me and tell me I was OK, and that this was just part of living with CF. Cried that my friend Donna was not here to make me feel all better again, and that her Lori is much better than this, and that her friend Lori would swoop and fly, like a graceful butterfly, outside of this restriction.

I also realized I blew the whole thing WAY out of proportion and that I could have handled it right there by just doing as they asked and been happy. But I resent being isolated and being the only weird one on the whole gym. If this is the new thinking about how bad bugs are dealt with, then am I better off dead??  Or more reasonably, this has been the thinking all along, but that where I come from, in Norfolk, it is a non-issue. Now that I am at the Big Duke CF Center, perhaps this is the way they run things for all their CF patients. Do they make you mask and glove at CF clinic? What about during CF tune ups? Anyhow....my wounded spirit today took a blow, and I reacted badly. So now, I’ll pick myself up, dust off the feelings of hurt, and go along with the game plan. I dread going back on Monday, to have to face another month of forced isolation, but somehow, the benefits of the program will be good for me, and that is what I have to keep my eye on. Graduating and moving on. I’ll be praying extra hard these next few days for the strength and courage to face the task ahead of me in a more mature manner and I think I’ll just have to chalk this one up to Lori having a meltdown. I needed a pity party to be mad at CF and today, I had it. So come Monday, I’ll take my anger and hurt feelings with me to the gym but I won’t let them win this time. CF can kill me, but it can’t kill my spirit and who I am. Outside of the gym, I am still Lori, and inside the gym, I am just “Isolated Lori” and that’s that. Move on girl! Kick butt and get over with this nonsense. I’ll try better on Monday, promise. Hugs from Lori.

Easter Sunday

Brian arrived about 11 PM Friday evening and it was so good to have him here. I told him just to come straight from work as I have everything here for him, including clothes and toothpaste. It’s like his vacation home here. Saturday it rained but we kept our appointment to get our photo taken and had fun doing it.

Today, Easter Sunday, we were worshipping in the house of the Lord at Mt. Carmel Baptist Church. I was introduced to a lady named Kathryn who is a Duke lung transplant miracle and she welcomed me so cheerfully!

I have enjoyed this quiet time with Brian. He was all packed and ready to drive home today but his car would not start! We called AAA and even they could not start it, so they towed it to the local Lincoln dealer and it is sitting there until Monday at 8 AM when they will check it out and test the computer onboard which seems to malfunction. So now Brian had to call his work and tell them he is stuck Monday in Chapel Hill and will drive home late Monday if the car gets fixed. Best of all, I get him all to myself for yet another night!

Back to Duke rehab Monday, with a new attitude of thanks that I can even go to their program and I’ve just had to tell myself I am better than being a quitter and I can do this. Shannon comes down for a few days midweek, which will mean fun for us both. It’s her birthday next week so I’ll take her out for dinner, along with another friend of ours who lived close by.

I have been so warmly encouraged by the cards and letters I’ve received from faithful friends at both the Chesapeake Christian Women’s Club and from Great Bridge Baptist Church. Thank you very much, ladies! Plus also thanks to Darlene Hello in Austin, TX, who always says the right things when I need to hear them. Her words of comfort always make me smile and wish we were closer so we could have afternoon tea and scones, along with chatting.

OK...time for a nap now. I am feeling well and doing well.

Will write more later,   Love from Lori

April 4, 2005

My Pulmonary rehab program is going nicely because I have had to overcome the isolation mentality and get on with living. I either let it eat away at me and do poorly, or get on with living and make the most of this experience. I feel I am fitting in with the group now and they are more accepting of why I have to be isolated from the rest of the group. I am trying to push my limits each day by upping the weights I can lift each day. They say to lift 40 pounds, I’ll try 45. I am not any kind of super hero, and when I do too much, I hurt, and pay for it later. I can come home to the Jacuzzi and soak for an hour, letting my sore muscles convalesce.

Last week, Shannon came down and stayed with me for a few days while being seen at Duke for her transplant check up. She was bronched and did very well. I also had weekend visitors from home: Judy and her mother and sister came from Great Bridge to visit with me and we had a wonderful time together. They arrived Friday at 5 PM and we just hung around. Went to church on Sunday and they had an awesome Sunday potluck dinner that we went to, then came home and watched movies. Today, they will head home to Chesapeake. It was a great visit for me as I felt so welcomed by their company and blessed to have them here. They also stopped by my home in Great Bridge Thursday to check in on Brian and to bring me the mail, so I can pay off those bills Brian just keeps putting back in the mailbox.

I also had a frank discussion with the Director of the Lung Transplant Program at Duke and after reading through my medical records, his opinion was that the only circumstance in which he would consider listing me for lungs at Duke would be if I had 2 living related donors who would each give me one of their lungs. In doing so, I would have a closer DNA/genetic match and possibly fewer problems with rejection. Duke carefully discussed with me my antibodies and said that the treatment that might reduce my antibody load, might also kill me. The medication to do this is very harsh on your immune system and they almost bring you to the brink of death, to save you, and Duke thought that was not practicing good medicine to try it out on me. We talked about IVIG and Plasmapheresis and other options. When Duke asked about my siblings, I told him I had 5 sisters, all alive and well but that.....wait....just a second...DUH!!!!  I am adopted. Only 1 of my siblings is biologically related to me, whilst the other 4 are not. So scrap that plan. That means that without 2 close biological donors, that option was thrown down the drain. So we have come full circle and have tried all options, but still, it’s No Lungs for Lori. Bottom line is I am not ever going to be a lung transplant candidate again and I’ll die with these lungs I have.

I asked him if I could be seen at the Duke Adult CF clinic and he will e-mail the doctor of it and try to get me seen soon. I will also try to get an appointment with a doctor who manages pain control as my home doctor is very reluctantly filling my pain meds and almost cutting my supply off. I have constant chest/rib pain from coughing and it is controlled with Percocet, but my doctor at home wants to wean me off it. I’d like to not have to use as much as I do, but it takes care of my pain. So we’ll see where it goes. Today is the start of a new week and I am filled with hope and encouraged to do the most I can at rehab and to enjoy it. There are those in the program who are worse off than I am, so I feel empathetic of their situation. One young lady has to use 15 liters of oxygen constantly...and she still looks purple! I thought my cyanotic episodes were blue, but she is a total blueberry! Some of the ladies fessed up about how they leave the gym, get into their cars, drive away from Duke, and can’t wait to light up and smoke a pack of cigarettes on the way home. That is their evil vice and they are trying to conquer it.

My sister Dolly called and she will come to visit for 2 weeks in the end of July with her 4 kids. I am so happy for this! OK...gotta get ready for rehab. Am off all antibiotics and doing ok. I feel well and have no complaints. Will update y’all later......Love from Lori.

April 9, 2005
Wonderful news of Praise! Yesterday, at 8:30 AM, that phone rang. It was the Duke Adult CF clinic calling to say they have an appointment for me April 28, and did I want it? YES! Amen for another prayer answered. You might recall I called them in March and they were booking for JUNE--way too long to wait. But...hugs to Dr. Scott Palmer, Director of the Duke Lung Transplant Program, who had my appt. bumped up. This is wonderful. My hope is that they will take over my CF management and work with my doctors in Norfolk to get me better managed and on the right antibiotic cocktail to keep me feeling well longer.

Brian will come here next weekend and we have signed up to participate in the Duke CF clinic Great Strides walk to raise funds and awareness of CF. It is a 2 mile walk and I spoke with the clinic social worker who said even with my CF bugs, I can attend. Just use normal precautions and come and have fun.

I am trying to arrange a Pain clinic assessment at Duke and we have been playing telephone tag with referrals and stuff. Hopefully soon it will work out. The last 2 days at Pulmonary Rehab, while they have been good, my sputum is nasty. The quantity is generous and I have slacked off just a bit on the exercises. I just increased my oral Prednisone dose to get me over the rough spots and that should kick in by Monday.

I am trying to get tickets for the James Taylor concert in Virginia Beach in July. They go on sale today on-line so I’ll try to get 2, so I can take my sister Dolly with me when she comes to visit in July from Canada.

Brian misses me terribly and has asked me to come home soon. He asked if I could quit rehab and come home now. Nope. I’ve got to finish the program and get the certificate for doing it. The furries at home have been e-mailing me to say they miss me too and to send some tuna. Poor Puddy cat is being ganged up on by Tucker Beast and Jaxson, and she wants me to come rescue her. I asked Brian to take her to bed with him at night and to encourage one on one bonding with her. She loves attention. She is my furry favorite. Of course, 30 pound Simon Boy thinks I’m totally gone from the picture and has written me off. Not sure what he thinks, other than he loves tuna and tummy rubs.

OK friends and family, off to try to get tickets for James Taylor on the internet then I’ll have a mellow, relaxing day. Tomorrow is church and I am looking forward to that. Our God is an awesome God!

April 13, 2005

Wow, time has flown! Pulmonary Rehab is almost over. 5 weeks ago, I would have jumped for joy that it was over, now I am sad it will end for me as I’ve seen the good it has done for me to be in the program. Funny, from being a whiny, crybaby, to now not wanting it to end, that is a whole 360 degree change of attitude. God works in mysterious ways...

I got over my “social leper” attitude when nobody else seemed to make anything of it and slowly, people asked me why I wore a mask and gloves, and when I took the time to tell them, I got understanding. I have made new friends in the group and hope to touch base with some of those waiting for the miracle of transplant. Even though it will not be my blessing to receive new lungs, I can be happy and supportive of those who are waiting, as I’ve been in their shoes.

Duke has a Graduate Pulmonary Program, but my plans include returning home to Chesapeake so I can be back at the job I love, starting in May. I am going back to work as a Death Investigator for the Commonwealth of Virginia. It was the job I was doing until transplant priorities excluded working and since their are no miracle lungs down the road for me, why not go back to work, doing what I love? When I “retired” 2 years ago, I was on oxygen back then, and it went with me to work. Same thing now, I have a big 100 Liter liquid oxygen system in my office at work and I’ll be able to fill up there as needed. My employers are more than accommodating and understanding of my desire to return to work, and if I did not have their support, it would not have been possible to work again at this job. Amen Lord, for my supportive employers.

I will return home to Chesapeake May 1st, and then come back down to Chapel Hill as needed when I have clinic appointments. I’ll come back down and have my house here ready for me. When Shannon needs to come to Duke for treatments, she knows she has carte blanche to come and go as needed to my house in Chapel Hill. My nurse Melissa, is living in the house for the whole year and she keeps things in order. She is very much enjoying her studies at Duke and is growing with knowledge. She seems happy here.

My Medi-port is doing something funky. It appears the pocket surrounding the port, is filled with fluid. Hmmm. I haven’t been doing anything with it, it’s not accessed, but you can feel the fluid surrounding the port and it is visibly bruised. It also hurts my right shoulder when I lift weights, yet, I have no fever. So I’ll watch it and hope I don’t have to anything drastic done to it. I am out of my network here and I only trust Dr. Dimick (in Norfolk) to manipulate my port. I’m praying it vanishes as mysteriously as it popped up.

I snagged 2 great tickets to the James Taylor concert in Virginia Beach in July when my sister Dolly visits me. Yahoo!!

Brian is driving down this weekend from Norfolk. It’s our 7th Wedding Anniversary on April 18th (Monday) and it’s Brian’s 41st birthday on April 19th (Tuesday). He has taken a few extra days off work to be here with me in Chapel Hill so we can celebrate and cuddle together. How romantic. The only thing missing are a few furry kitties.

OK....great to hear from my sister Noreen recently and I am praying for the decisions ahead regarding buying and moving to their new home. My sister Dolly and I talked a few days ago and I am so glad I’ll see them in July for 2 weeks. Sister Brenda e-mails and I haven’t heard from sister Nancy in a long time. Sister Vicki is in e-mail contact with me. I am so blessed to have sisters who love me and pray for me.

Chat again soon, Love from Lori  x0X0

April 15, 2005--Graduation Day

Today I graduated from the Duke Pulmonary Rehab program and what a crybaby I was. I kept my composure while in the gym and while doing the exit interview, but later, out in the parking lot, 5 of us gathered around, huddled and prayed. We thanked the Lord for allowing us to come together in this program and for the miracle of transplant that 4 of the 5 are waiting for. I am the only one who is not going to receive new lungs, but that for the 4 who are waiting, I told them that I envy them and pray that they will have the best outcome possible. It was teary for me to know that all of them are going to get something denied to me--new lungs--and how do you not show your hurtful heart that you won’t get lungs? Well, the key is to pick your battles. This is something I can’t change or can’t win, so I need to show my love and support for those who will have that chance and to focus on their happiness. I am trying to be humble and understanding, but it is hard when I see their faces light up when they talk about life with new lungs and I’m forever stuck with my current, crappie ones. So Lord, please continue to work on my heart and give me the strength I need to thank you for what I have, and not to cry over what I won’t get.

I have trusted the Lord along this whole journey, and by not making me a lung transplant candidate, even in that, there is grace and glory to sustain me. It was not the Lord’s plan for my life, for me to get lungs, but He still has a wonderful plan for me, and acceptance is becoming a little easier once I dropped all the anger I had at being dropped from the transplant list. Life is too short to be miserable and a crybaby, so I must make the best of what I have. There are those much worse than I am, I saw them in the program alongside of me, so on that scale, when life gives you lemons, make lemonade.

The Duke program was wonderful for me. I am so very pleased I stuck with it, completed it and graduated. Perfect attendance. Not one day missed in 5 weeks. Even those days when I wanted to stay home, I went, and I am very proud of myself that I accomplished something I tried to quit--twice. Read the previous entries and you will recall how I hated the program and was going to QUIT. I didn’t. I survived. I conquered my demons and triumphed. Amen for the staff (especially David) who encouraged me and were very professional. I am blessed for having been at Duke for these past 5 weeks and I plan to take the lessons learned and continue to exercise as best I can when at home. Finding a gym who will enroll you when you have oxygen is impossible. Only hospitals will take you, if they have a pulmonary program. We’ll see what I can do when I get home. So before I move on, let me yell out loudly for all to read that the Duke Pulmonary Rehab Program is an amazing journey back to wellness and I recommend it. I am so very glad I stuck it out and finished.

I met Michelle, Michael, Angie, Helen, Ann, Evelyn, Mary, Kristine, Mitzi, Ronald, Shayne, Bud, Deb, Larry and others who all made the experience wonderful. Thank you, Friends. Big hugs to David, Mark, Sherri, Rebecca, Cynthia, Mike and Craig, the staff that holds to program together.

More good news: The Duke Pain clinic called today and I have an appointment in 4 days! This is a clinic that normally has a 3 month+ waiting list to be seen. I asked Dr. AJQ for a referral, and I explained how I needed to be seen before I left Chapel Hill on May 1st and could they please squeeze me in somewhere ASAP. The triage nurse pulled off a miracle. Thanks Deb! The plan is for Duke to consult on my chronic chest/rib/thoracic pain and advise my doctors how best to treat it. I am using Percocet and have been for 3 years, and it works fine for me, but my doc at home is afraid to keep writing the prescription for me without a pain consult. OK. Will do. More later....Hugs from Lori

April 19, 2005

Today is Brian’s birthday. We were pretty much low key these past few days as I have not been feeling well and Brian has not pushed me. Thank you Hun. Today, we had an 8:30 AM consult at the Duke Pain Clinic and I was assessed by Dr. Sonia Pasi. She took a thorough history and did an exam, and after discussing it with Brian and I, she recommended I wean off Percocet and begin Duragesic pain patches. I told her my perception is that something that strong is used for palliative care issues and end of life pain and dying, right? She corrected me and said that is not so, but that rather than having the cyclic 4 hour cycles of pain treated with Percocet, Duragesic was a better, long lasting option. She suggested I give it a month of trying it before I determine if it is the right med for me, and to slowly wean off the Percocet. Plus, I’d have to be seen every 4 weeks for the first 3 months to monitor compliance and any benefits, but that my family doctor can do that. She will send him a letter detailing how she wants him to take over my pain management. I see my GP tomorrow to begin the patch.

I was going to stay in Chapel Hill until May 1st, after my appointment at the Duke CF clinic, but I am feeling yukky and Brian wanted me closer to home. We are strangers to Duke, so I agreed to come home with him and we will return next Wednesday evening to be ready for the Thursday clinic. I think being in my own bed, surrounded by 2 warm furry kitties, is the best medicine I could take. 

May 1, 2005

Hello Friends! Since we were last at Duke for a pain clinic consult, many things have happened in my otherwise sedate life. The Duragesic pain patch has been increased to 2 patches every 3 days and that is working for me. Usually on the third day, I am having breakthrough pain that requires Percocet to take care of it, but it is not at all like it was before, with me gobbling Percocet every 4 hours for pain. Now it’s spread out over 3 days without the peaks and valleys of chronic pain. Finally, I seem to be in control of my chest/rib/thoracic pain, and since I am not going to get new lungs, these are the ones I am stuck with and have to work with, but when you can effectively manage your pain, then doors open to other possibilities which had been closed previously.

Brian and I went back to Duke last week to meet with the Duke CF team. It was a 3 hour appointment during which I used up 2 of their oxygen tanks besides my own. We met with the CF social worker, who was wonderful and who listened to our concerns, then the CF Nurse practitioner came in, followed by the CF nutritionist, then Dr. Kussin was last. A long day but progress was made. Dr. Kussin went over my CT scans with Brian and I, circling and highlighting the damage CF has done to my lungs. He said he has seen worse, but that my findings were significant and clearly shows I do have CF damaged lungs. Other doctors have said my CT scans are fine, negative, nothing, no CF, and I don’t need a lung transplant, so Brian and I were satisfied when Dr. Kussin took his time to show us the damage and validate that my lungs are end stage CF, and that it’s not in my head.

Duke was pleased I have a Mic-key button (in my abdomen) and asked that I keep it there, even if not using it now. No problem with that. Duke prefers Hickman catheters, but I am a life long Medi-Port convert, so that’s where I’ll stay. We talked about other complex issues and I’ll return again in July. When I need the next CF tune up, they opened the door for me to be admitted to Duke for inpatient care. If I am in Chapel Hill at my other home, it’s an option, otherwise, I may elect to go to my old haunt in Norfolk for emergent care. We’ll see. Duke loved my pulmonary cheat sheet with all the clues about how to manage my care and they will try to follow it. They have read through the medical records from UNC and were sad I was taken off the lung transplant list as Dr. Kussin thought I was a good candidate for transplant.

Another cool thing....when the CF nurse was doing a history on me, she asked about hemoptysis and I told her I had not had any major lung bleeds since February 2004, and that it’s been about 2 weeks since I had any bleeding at all from my lungs. Well just then, I coughed, and coughed, and coughed out a lung so badly that I bled. Right there, my trach filled with blood. The timing was perfect so they could see it happening and document it. It was only about 40 ccs and then it stopped, but it was kind of like, “hemoptysis on demand” and backed up my claim that I still do have bleeding sometimes.

Nothing else has changed with my medication routine. They might suggest a macrolide pill for inflammation, but to keep up with the Vest therapy and doing nebs. They were pleased I have completed the Duke Pulmonary Rehab program and were glad that I am scheduled to return to work the weekend of May 13. I told them what I do (Forensic Death Investigator) and that it’s been 2 years since I was “medically retired” but all is in place for me to be on call, taking cases for the Medical Examiners office, starting with weekends in May. I am so thrilled this will happen. Rather than rot away at home doing whatever, I am pushing myself to get out and work. No welfare for me. I am prepared to work to boost my self esteem and to do the job I love doing. Why just weekends? Because that is when more people drink, drive, and die, so then I get to do my job.

Brian and I stopped in to the Duke Center for Living on Friday to meet my Pulmonary rehab friends. It was nice to be welcomed with hugs and to chat with the folks there. Rita, who got her new lungs 3 weeks ago, looks so healthy! She was on the floor doing mat exercises when I saw her. Kristine will be going active this week, and Angie was made active last week. Michael (his photo is below) had a dry run as he waits for both a heart and lungs. All are waiting for the gift of life. My friend Mary, who was transplanted a year ago, finally is off all oxygen. Michelle had a fundoplication wrap and will recover and return home soon. She is a long way from home and misses everyone. Sadly, one in the group died post-op from complications and his memorial service was Friday. It has been said that everyone who goes to the Duke Pulmonary Rehab program has cheated death a few times over, and deaths are expected from amongst the sickest of the participants. When you sign on the dotted line for transplant, you have come to the acceptance that you might die, but without a transplant, you will definitely die, so each day is precious. Michelle is the toughest fighter I have met at Duke. She is a quiet young lady, so just let me say if it came down to either she or I who could ever get new lungs, I’d want her to have them. She is a remarkable, kindred spirit.

OK... I’m home in Chesapeake with Brian and getting things back into order here. The cats all missed me terribly and there’s no place like home. Thank you to all the prayer warriors who have brought Brian and I to the Lord in prayer. Take care and tell someone today you love them. Hugs from Lori xOoX 

May 4, 2005

Good Morning! I have just heard that my friend Michael, from Duke Rehab, received his heart & double lung transplant yesterday. He is a very humble and shy guy who moved to Durham with his mother to be ready for the transplant and they got their miracle yesterday afternoon. Not even when he was having a bad day, would he wimp out and not show up at the gym. He was always there, toting his cart of liquid oxygen and walking laps, forever walking laps.

We often encouraged each other as we struggled on the floor mat doing the exercises and he always did it without cheating. His mother and Pastor are at the hospital and his sister is coming into town to help. I ask that you pray for Michael’s recovery and that his family would be comforted during this scary, but joyful, time. Also, the donor family is planning a funeral and this is their worst time, yet they gave the gift of life. Thank you.  

May 22, 2005

Hello Family. Where have I been? Back to Norfolk General, to the ER to be seen. The fever it came, high at 104.2, and knocked me down, for a day or 2. So off to Club Med, to be seen by the docs,  and home I am now, to recover lots.

OK...so I had a fever of 104.2 and thought it was just viral, something like the flu was going around, but when I felt the rice krispie crunches under my skin, Brian dragged me to the ER. Seems that the area surrounding my right chest mediport was infected with an abscess and it was making me sick. When you touched the skin on my right neck, it felt like the snap, crackle, pop, sound of rice krispies. This is not good. The short end of this story is that my chest mediport was removed and another one put in in my groin. Yes, I am being truthful when I say “in my groin”. A new mediport is now in my left femoral vein (in my crotch) with the double lumen port (the bulls eye) just a little further away on my thigh. Sounds awful, and it is. Who else has a “pussy port”? Nobody I know. So now when I need to be accessed for IV meds, I have to drop my drawers for them to grope around and get to the port. Terrible thing to have to live with, but this is my last hope for a vein, so I had to consent to it being done. I have absolutely no veins in my chest to work with anymore and so we had to look at the femoral veins for access. Things could be worse.

Dr. Dimick removed my old mediport and had left the wound open, to heal from the inside out. It is so gross, looking at this 2 inch gash in my chest, waiting for it to heal and close. Here is a picture of the hole. I am not smiling. Everyday, a nurse comes to pack the wound and change the dressing. It is quite painful. It should heal and close in about 4-6 weeks. I am just infusing one IV med through the new port until June 21, when it ends. I missed my first weekend of work when I was in the hospital for this crisis but will be back on call for Chesapeake the last long weekend of May. Amen I can return to work at all! Now, I am resting up at home, sleeping well and soundly, and just healing and not stressing out. All is good for me right now. Hope you can e-mail me and drop a line of encouragement. Hugs from Lori

A Few Hours Later...

Today my new home care nurse came to pack my chest wound and she was quite alarmed at how swollen I was. Yes, I noticed it too. When I woke up, I was very puffy, swollen and had a slight temperature. I took 40 mg of Lasix hoping I could pee off some of the volume but it didn’t do much. My nurse then pages the pulmonary doc on call and he advises me to go to the ER for an assessment. I told the nurse I was hosting a BBQ in an hour and couldn’t go right away, not while I had the steaks on the grill cooking. Anyhow, I rested some, laid back in my new patio chaise lounger, and then when I was ready, about 7 PM, Brian took me to the ER.

What a waste of time. I was triaged in the ER by our friend Gary, who then called the pulmonary doc and explained it to him. The doc thought I was kinda like a big round pumpkin, according to the home care nurse. I was a little swollen, had a temp of 101.5, and felt no worse, so it was decided I could go home and chalk this up to a first time nurse who doesn’t know me, being on the scared side of cautious and ringing the alert a bit too soon. I have never been in and out so quickly from that ER before. Brian is watching a movie in the home theater and I am catching up on e-mail and bills. All is well and slowly, my new Mediport is healing. Good night to all. Love Lori  oXoOXx

A Week Later...June 3

I’ve just been discharged from Norfolk General Hospital after another gripping 7 day stay. It started a week ago with my home care nurse coming to access my Medi-port. Nothing out of the usual happened and all was well until 4 hours later when I burst out with a fever of 104! Scared me. I called Brian and he came home. We paged the on call doc in my pulmonary group and he met us in the ER. Our favorite ER Nurse is Gary, and he triaged me very quickly. Thanks Gary! My temp was 105.3 and I was miserable with fevers, rigors and pain. I was admitted to the ICU and watched over carefully. Then 3 days later sent to the Step Down Unit then to the floor and tonight, I’m home. I still have my mediport (in my crotch) and it works well and fine. I did not lose it to infection. My biggest fear that was I would have to have it removed. How I prayed for a miracle so I could keep this very new port. We fiddled around with antibiotics and we found a good concoction in Nafcillin, 2 grams every 4 hours, which seems to work for me. The only drawback is the dosing is every 4 hours and that does not allow for much sleep. This is supposed to continue until July 8th. I was pleased to be cared for by Dr. Randy Garnett and to have his wisdom at work so I could get out soon and be home with my much missed puddy cats. Thanks ARG.

Welcome back to work. This was also my second week back to work, taking death calls for Chesapeake. Last week, there was just one death and I was sick in the ER, so Dr. Bush took over for me. Now I am on call until Monday morning and am ready to go if called to attend a death scene. After 2 years of being medically retired, I am now taking call on a schedule I draw up that works well for me and for the office. I have committed to all the weekends in June, hoping that some cases will come my way in Chesapeake and I can use my skills at the job I love. OK....now.....it’s time for my IV med and some sleep. My ears will be awake in case the phone rings and the police are calling about a case. Then I’m there. I’m jumping right back into life again and it feels good. Amen and Thank You all.   Hugs from Lori OOxxXo

June 14

Sorry to have been so neglectful in updating y’all about my life but you see, it is getting busy and interesting. So busy that I haven’t been able to sit down and update my family on how well I am doing right now. OK....my new Medi-port has issues. It will not let us get any blood from it. Bummer, since I have weekly lab work while I am on IV meds. I went to see Dr. Lara Dimick (my sweat heart surgeon) about this today and she will have me go to the hospital for them to mess with it tomorrow in the infusion center. Then she looked at my chest wound and was amused. It has this malodorous pus oozing from it non stop. The good news is that whatever gram positive bugs are living there, they are all sensitive to the IV antibiotic I am on. She has changed the dressing we are stuffing into the hole every day to a product called Aquacel Ag and this should help. It is still quite sore and every day my home care nurse comes to change the stuffing and pack it again. It’s been 3+ weeks and ohhhhhhh so slowly, we are making progress. Being on Prednisone accounts for the delay in healing. Hang in there, Lori!

I had an appointment with Dr. Randy Garnett on Friday and it went well. Brian always goes with me as my second set of ears, plus Dr. Randy also asks Brian for his take on how I am managing. He was pleasantly surprised how well I am doing and made me promise not to sleep with any kitties draped around my trach at night. He said something along the lines of he saw cat hair around my trach and chest wound and oh boy.....he made me promise to make my bedroom cat free for 1 month. Yeah....right.

He is allowing me to drop my oral Prednisone to 20 mg each day and take it from there. Yeah......My hemoglobin remains low, but since I refuse to take oral iron supplements, I’m my own worse enemy. I hate those pills and won’t take them.

Blue Cross was a real snot to Dr. Randy when he tried to get Procrit prescribed for me to boost my red cell production. I guess I’ll have to hand in my membership to PETA now and just go each a raw steak or two to get some iron.

We also have to drop our insurance coverage with Blue Cross effective July 1 and take another plan as the renewal premiums jumped 45% with Blue Cross and only 25% with the plan offered. Not good. Blue Cross really worked well for me in allowing me to go out of network to get care, plus they are paying for my Therapy Vest which Optima won’t cover at all. The only bad part is that as of July 1st, Duke is no longer covered under our new plan so I can’t be admitted there for CF care. This sucks big time. I really wanted Duke to take over my care, which is a reason to have my house in Chapel Hill, so I can go to Duke. So as of July 1st, it’s a whole new ball game and Duke is cut out of the picture, for inpatient care. Lord, give me wisdom to deal with the insurance idiots.

But things get better ‘cuz my sister # 4, Dolly and her 4 kids are coming down in July for 2 weeks. I last saw them all in October at Kevins (Dolly’s husband) funeral. But they will have only happy times here doing neat things and being kids. Then sister #1, Noreen and her husband Gordon, are coming down in September. I am so excited to have my family come stay here with us. I am praying I’ll be well and not in the hospital when they come. Then sister #5, Vicki flies in from the Great White North of Canada in October for a cruise to the Bahamas with me. I am so blessed to have 5 loving sisters who all care about Brian and I. My parents brought up 6 girls to love the Lord and follow Him, and it is truly joyous when we can think ahead to spending eternity together in heaven. Amen. So...I am on call this weekend for any deaths and the pickings are slim. Just one call last week. I’d starve at this rate. I might take a few weekdays, since more people seem to drop dead on weekdays than on weekends, so it seems. Strange, but I love being on call and take it very seriously when I am called to a scene.

My pain is being managed somewhat with Duragesic 150 microgram patches but I need it increased as it is not covering me well enough. I have way too much breakthrough pain, so I’ve got an appointment at the Duke Pain Clinic in July for a consult. I can go in July, but it means I have to pay out of pocket to be seen as they don’t take my new insurance, but it means enough to me to pay out of pocket to be seen there. OK...time for IV Nafcillin then bedtime for me. I love my sisters and can’t wait to see them again.

Brian is working very hard to get the automation at WHRO (PBS affiliate in Norfolk) up, running and tweaked, so that things run smoothly at the TV station. Brian is a closet genius. He has an aptitude for finite math, physics and time travel. He is my genius. He also likes to shop and buy from eBay, where he gets capacitors, resisters, and other electrical things he needs to build neat things. I love you, Brian. O Lord....thank you for these times of health when I feel good. 

I am home. Back to the hospital for complications with my new “Pussy Port”. Saw the vascular surgeon June 16th and was sent to the ER to be admitted to have the dysfunctional Medi-port removed. My left thigh and groin were very, very swollen and infected. I cried in such agony as the pain was dreadful. Went to the operating room about 7 PM on Friday the 16th and the surgeon said I’d be back home in a few hours. “A piece of cake”, he said. Yeah right, this is Lori we are talking about. He didn’t know me. Called Dr. AJQ, who was on call for pulmonary and gave him to typical Lori story about this most likely will be an admission and not a quick in and out thing. 20 days later, I am home. The pussy port was removed and the wound had to be left open to close. They applied a would vacuum to it and it was sucking out pus and infection for 14 days straight. It is a nice machine that worked well for me. Then while they took that Medi-port out in the OR, they then put a triple lumen line in my right femoral (groin) as I needed IV antibiotics and I have zero peripheral veins available. It’s been 22 years with Medi-ports for me and I have had 14 Medi-ports which have helped to keep me alive, but also have chewed every vein available up, so only my right groin vein was available. But after a week of that, it too, was infected and was then removed. Hmm....no veins. What to do? Surgeons wanted to bring me back to the OR in a few days to put in another pussy port on the opposite side this time. Now wait.....the left one went bonkers after 28 days and had to be removed, so I am not at all fond of another pussy port down there. More germs, and it’s not a nice place. Warm, dark, and for most females, a period each month to add fun to the recipe. Not a hospitable place for another Medi-port, but the vascular surgeons said this was it as far as having another Medi-port placed. Then the ID docs had their say and said you can’t go muck around the garden when there is infection, so they wanted me to have a “line holiday” and come back in a few weeks when everything was healed. A line holiday means no IV lines at all. YIKES!!  This also means I am without a safety net should I do poorly. OK Lord....I’m on my knees again, asking for your grace to keep me well until the surgeons can go back in and find a place another Medi-port. Please pray I “grow” another vein somewhere they can use.

More later.......love from Lori oXoXxx

July 5, 2005

I just wrote yesterday but I was kinda not up to writing much then and now, I feel so much better! I am on Zyvox 600 mg twice a day and I am holding my own and feeling better. Much better. Praises to Jesus for this! I have rested up and have no worries today. My home care nurse will come tomorrow to change both my old Medi-port wound sites, and I will be glad to get them changed. They are leaking through the dressing and I want to get this healing going.

My friend Shannon is at Duke, having her own nightmares with IV lines too. Tomorrow, she will have yet another Medi-port surgically implanted (who hasn’t had one??) so she can continue on with anti-rejection meds for her healthy transplanted lungs. She is in the hospital while her husband and boys are staying at my home in Chapel Hill and enjoying the pool and playground. It’s a home away from home when needed for medical reasons and I am so blessed to have this home to offer it. Melissa is the quiet church mouse who keeps the house looking lived in and attends Duke grad school. She is so neat, wonderful and a genius, I say. Brian and I will be back at Duke at the end of the month to be seen at the CF clinic. We love them there.

I took photos with my digital camera during my last admission and here are a few:

This is Dr. Chee Woo. He is a hospitalist, which means when your own doctor doesn’t come to see you when you are admitted, the inpatient rounding team does the job for them. Some doctors spend all their time in the office and don’t go to the hospital, so Norfolk General sends in this team to take care of you, follow you, and write all your orders, including being discharged. I have had Dr. Woo a few times and I really like him! Being this was my Independence Week admission, I’m shooting off the fireworks for Dr. Woo. Cool!

Please send me home. Walking the River Pavilion corridor hoping they will send me home soon. The Elizabeth River is in the background with Portsmouth Naval and the Shipyards in view. My wound is looking cleaner after surgery. Packing the wound and fighting the MRSA bugs.

July 23, 2005

My sisters and family are here from Toronto and they are having a good time. I haven’t written sooner as I am tired most evenings after a long day and just want to go to bed. Dolly and I went to the James Taylor concert here last night and had a good evening out. The kids watched a horror movie and were scaring each other all night. Today, they have gone to the library for a free Star Wars thing of Sci-fi adventures.

On Wednesday, my friend Angie from Duke, received her double lung transplant. Angie had waited so long for these perfect donor lungs and she was very hesitant about having the transplant. She told Brian and I over dinner that she was thinking about the worst outcome (death) and leaving her husband alone. She was afraid to take this next step but she knew without this transplant, she would soon die.

Today, Angie died. It was too much for her weakened body and after a few days on the ECMO machine trying to rest her body and heal, the Lord wanted her home. Amen for her blessing in my life and for the life she led by volunteering and being a support to those waiting for lungs at Duke. She would go the ICU to wait with the family and help them with questions post op, as everyone goes through Duke Pulmonary Rehab pre-transplant, and then they get the call for lungs, and it was Angie who was there in the waiting room doing her rounds, encouraging the patient and the family.

I am sad she has died. Angie was such a vibrant life and she wanted to live. Yes, she was sick of being sick, but she held out such hope she would get well and be able to eventually return to work, as a nurse. She loved her doctor, Dr. Tapson, and she saw this friend as her hero. He was going to fix her up and they would grow old together. She had such hope. She told me she knew she might die, but she had such strong faith that the Lord would look after her, and He did....He brought her home with new, healthy lungs and no disease--in heaven.

For every transplant miracle, there are those pioneers along the way who die. One leap forward, 2 steps back, and to think I was in the midst of it all, ready to be called for my new lungs, and the very same thing could have happened to me. By no longer be a lung transplant candidate, I have removed myself from the anxiety of waiting for the call and now there is no miracle at the end of the rope for me. Just waiting, was an anxious time for Brian and I...just waiting for someone to die to save me...to have one foot in the grave and the other on a banana peel, thinking each day might be your last. Now I am living life more vibrantly than ever and with such gusto, because in any minute, it could all be gone.

Lord....Thank you for the blessing of Angie’s life and for loaning her to us for 36 years. She fought the good fight, finished the race, and now she has perfect lungs and is healthier and happier now than she could ever have imagined. Thank you Lord for the gift of transplant, and for the medical teams who fight for the lives of their patients. Thank you Lord for my life and for the assurance of eternal life through Jesus Christ, my Savior. Thank you Lord for loving me, frail as I am and full of faults, one day to be rejoicing in heaven with all my CF friends who have died, and with Angie, whom I’ll see again....one day down Heaven’s road.

Mrs. Angela R. Hill, 36, of 2414 Faucette Ave. Durham, died Saturday morning, July 23, 2005 at Duke Medical Center. Mrs. Hill was born in Wagner, SD. She was preceded in death by her biological Mother and Father, Louis and Virginia Podzimek and a brother, Rodney Podzimek. Angie Hill is survived by her husband, Russell Hill. Angie was a Registered Nurse at Duke Medical Center. She was a graduate of South Dakota State University with a B.S. in Nursing. She earned a Masters Degree in Science and Nursing from Duke University. Angie was a member of Guess Rd. Baptist Church where she served in many capacities. She was a humble servant of God. A Funeral Service will be conducted Tuesday at 11:00 a.m. at Guess Rd. Baptist Church by Rev. Gregory Clark. Burial will be Friday, July 29^th, 2005 in St. Mary’s Cemetery in Dante, SD. The family will receive friends at Clements Funeral Home Monday from 6:00 p.m. to 8:00 p.m. In lieu of flowers the family suggest contributions be made to American Red Cross, Blood Services, 4737 University Dr., Durham, NC 27707 or to Guess Rd. Baptist Church Whitehouse Fund, 3102 Guess Rd., Durham, NC 27705.

July 23, 2005

Yesterday, my family flew home to Toronto. The house is quiet without their laughter to fill it up. The cats are missing being doted on and brushed by them. The kids (all 5 of them) had a good time. We all had a good time and I know happy memories were laid down that again, reflect how important family is. Thank you sisters Nancy and Dolly for coming and hanging in there. We had a great time at Busch Gardens, Williamsburg. I rented a scooter and got around the park all day. It was 102 degrees on the day we went and I gobbled down salt tablets and pretzels as I was losing a lot of sodium by sweating. Everyone had a fantastic day and it was good to get out and have a blast!

Brian and I went to Duke 2 days ago to meet with the CF team and also the Duke Pain clinic doctor, and everything was good. The Pain doctor set guidelines for how high I can go on the Fentanyl (pain) patches and suggested an implanted pain pump in my back if things progress beyond control of the patches. I am not interested in that option and prefer taking pills instead. We will return in 3 months.

The CF clinic doctor advised me not to have another femoral Medi-port inserted. He said in his experience with CF adults, they are more trouble than they are worth and instead asked if I could be admitted and have a temporary triple lumen line put into my femoral and to use it only as an inpatient. Not to go home on it at all. He said it would mean I’d be committing to a longer stay to get a full course of IV meds in the hospital but that the rest would be good for me. He will send his clinic notes to Dr. Garnett and we will discuss it. I am scheduled for day surgery in August to have another “Pussy port” put in, and I don’t want it. The last one was so dreadful for me and I am sickened to think I’d be opening myself up to another infection which was very painful. Once bitten, twice shy. We’ll see what good Dr. Randy has to add.

I am feeling tired. I am amazed how well I kept up with all my family here. I was not cyanotic or severely short of breath, and I didn’t cough up any furballs either. Thank you Lord for preserving my health so I could be here for my family to visit. My sister Noreen comes at the end of August, then her husband joins her into early September. We will have fun then too!

I constantly think about my friend Angie, who died last week after her transplant. She woke up in Heaven. A bit of a shock considering she was so active and doing pulmonary rehab faithfully every day at Duke, plus she was not slacking off. She took care of others more than herself. Angie would be in the ICU waiting room with the family while their loved one was getting transplanted. She met all her friends in pulmonary rehab and was active in helping their families understand the post op process. She was a NICU nurse who hoped to return to work when she was all fixed with these new lungs...but the Lord had other plans for Angie. He knew her recovery would be too difficult without strong family support and decided Angie was the angel He needed that day in Heaven. Out of all the souls He could have had come home to Heaven, He chose Angie to brighten Heaven’s garden. That I will see her later one day in Heaven, is my way of dealing with it. And also I’ll see Jeff, Dannon, Stephanie, Maria, Jason, David, Billy, Amy, and all my other friends who have died fighting the enemy called cystic fibrosis. CF will kill our bodies, but it can’t take our soul, which has been given over to God.  

August 1, 2005

Dr. Randy Garnett called me today and we discussed the upcoming day surgery on August 12 for another femoral Medi-port. Duke is opposed to another femoral Medi-port for me specifically, and asked me to reconsider. Dr. Randy and I spoke about it and essentially, he’s leaving it up to me to decide. The pro in having another Medi-port is that when I need lab work done, I have a vein to poke into to get blood. The con is that it’s another femoral approach and I did poorly with the last one. Another con is also that you have to stay in the hospital for the duration of the IV therapy, but the pro might also be that you can get more rest and get all your chest physio done. Not bad. Dr. Randy says a femoral line still has to be changed every 7 days, so it would still mean 2 or 3 line changes, and punctures with the procedure make it hurt! So am I really better off with the suggestion Duke advocates, or go with another Pussy Port and tough it out? The problem, as Dr. Randy stated, is that I am at the end of possibilities for veins and this puts me in an awkward position. Dr. Randy suggested that the femoral Medi-port might be tunneled up into my abdomen, as he has seen another patient with it done this way. No thank you! More problems with colon/intestine issues mucking things up in there. Dr. Randy also said the line could be sewn directly into my heart, but this involves open heart surgery with a median sternotomy, and I replied “...No Thank You.” Dr. Fogle, the vascular surgeon, said he would suture the Medi-port more laterally (on the outside) of my upper thigh, away from my crotch. This sounds like a happy compromise. So now Brian and I will discuss this over dinner, pray about it, and pick the best approach for me.

I am hopeful I will have a new collateral vein in left left upper chest to tap into. Wouldn’t this be amazing? Sometimes, you “grow” weird veins (collateral’s) when other veins clot off and if this happens, I might have a way of securing access without using any femoral sites. We all know I am an odd ball, and to prove this, I was born with just 1 jugular vein. Everyone else has 2, one on each side of their neck, but the Lord saw to it that I was given just 1. But the one jugular vein I do have, on the left side, has been hit a few times and we don’t know if it is now usable. So that is my prayer....that a new collateral subclavian or jugular vein appears when I go to the Peripheral Vascular Lab before the day surgery. If I have a good vein, just one, and it is patent and usable, then amen Jesus and away we go. If not, then it was not in the Lord’s plan for me this time to have a collateral vein and then it’s back to the Pussy Port option.

Please keep this as a prayer request from me: that they will find a collateral vein in my upper chest that can be used. Other than that, I am hanging in and trying to keep my sputum thin, by drinking tons of water. It’s getting gross, so something is brewing. Dr. Randy sensed it and knows I am cooking up some beasties. He asked me to come sooner than later to the ER if needed and not to arrive cyanotic and half dead. I said I would listen to him, this time. OK....chicken kiev is cooking and smelling soooooo good. Gotta go.  Hugs from Lori XoOxxxO

Update:

The vascular surgeon just called. Dr. Martin Fogle is a super sweet guy and I really like him. His New England accent is very calming and reminds me of being at Yale. We discussed the surgical options and the bottom line is this: I’ll go to the PVLab and if they can find a usable upper chest vein, it will be tried. If nothing, then I agree with Dr. Fogle (and Duke) to exist on temporary femoral lines for as long as possible until that too, is not the best course of action for me. We discussed how being in the hospital for 3+ weeks doing a CF tune up, exposes you to all kinds of Super bugs and infection, but then I would not have to go home on IV therapy and the line would be pulled. I like that option. I’ll just have to bring lots of book to read, since the TV channels in the hospital suck. After a long discussion, I felt confident we had discussed the issues and that both Dr. Randy Garnett, Dr. Martin Fogle, and myself, all connected and made some leeway. More later...

August 1, 2005

I had my ultrasound today and am waiting to hear what they found. I am scheduled for day surgery Friday August 12 for another wretched femoral port (“Pussy Port”) and hope it does not come to that. I’ll update you when I know. Prayers always appreciated.

August 10, 2005

Still no news. In fact, I haven’t heard from the surgeon or anybody about what the ultrasound showed so I can’t make an informed decision without the information. Then today, at 10 AM, the hospital calls and asks where am I? That I’m late for my surgery. WHAT?? They said I am booked for a 10:15 AM OR and will I be there in 5 minutes?!! I was very upset. Not only have I not heard from the surgeon to tell me what is going on, but they had me booked under another surgeon totally. Somebody messed up.

When I called the surgeons office (again), they said I was booked for the OR today and they were going to explain my options to me then. Right. That’s too late, dumbo. Without the ultrasound test results, I am in the dark. Do I or don’t I have a usable vein in my upper chest? If yes, can we tap into it for another Medi-port? If the ultrasound shows no vein, then no way am I going to the OR for another Pussy Port. And they wanted to tell me the test results when I showed up at the hospital? It doesn’t work that way. I’ve been in this game called “Living with CF” all my life, and you have to work with me baby, not leave me in the dark. So I am frustrated with the lack of communication. I called the surgeons nurse again just now, at 5 PM. and asked the doctor to be paged and to call me ASAP. I did the same 2 days ago, and again yesterday. Why are medical practices such lousy communicators?

So now I wait and wonder, a week later, what my ultrasound shows and what to do next. The Lord is holding my temper down to a slow boil now, but I am not at all feeling that anyone is in the loop on this surgery thing and coming to advocate for me, the patient.

Later that same evening...8:15 PM...

Dr. Martin Fogle just called. He’s in Las Vegas at a conference, which is why I did not hear from him. I understand. I can’t be mad at him--he is such a cutie. Anyhow.....drumroll here....I have no usable veins for a Medi-port anywhere in my chest. We found out 5 years ago, I was not born with a right internal jugular vein, so that was not even available to be used. My left jugular is open, however, it has zero flow through it, meaning it can’t be used for a Medi-port. I am coming to the end of my rope--my only vein at this time, is my femorals, which will do the job. So no Pussy Port, just temporary Pussy Lines to administer IV meds to me while I am admitted to the hospital. This means my CF tune ups now commit me to a longer inpatient stay as you are not allowed to go home on femoral lines, according to most hospitals policies. So I’ll bring books and a DVD player to occupy my time while I wait for the meds to work and for my body to heal. I am not looking forward to this colossal waste of my time. It also means CF is winning another hand at making my medical management more difficult. With a Medi-port, I could be at home doing IV meds and be in my own bed. That changes with this newest ultrasound finding. OK Lord...you have brought me up to this point in my life for a reason, so please give me the grace and strength I need to endure this latest setback. I need another dose of faith right now to believe this is the best approach for me to take. Will it mean I die sooner without a line available instantly? Nope, but it makes things more technical. Besides, I am having way too much fun this summer to die soon. Life is just too good for me right now to want to die, but when that does happen, celebrate that I am in the arms of my heavenly Father and would prefer no better place than that.

I’ll try to go to the ER when hopefully, one of my two favorite ER nurses are working. That would be either Gary or Katherine. Either/both will hold my hand as they have me drop my drawers and poke my groin for the femoral line, and I am not embarrassed with either RN in that situation. Oy vay! 

Another burden off my chest, so to say, and now I can relax without worrying about what was going to happen with this whole issue. My sister Noreen, is coming in a few weeks for a visit and we will have such a wonderful time, being joined by her husband also, whom I really love. So more fun ahead for Lori. Thanks for your prayers.......xOXoooo

Below is an article a friend of mine wrote about me. His name is Doug Peavey and he is the President of a a company that specializes in forensic and law enforcement equipment. Peavey has some really neat things to catch the bad guys with. Check him out at www.lynnpeavey.com. Thanks Doug!

August 20, 2005

Today is another humid day in the South and I love it. Brian had to go into work today (Saturday) as they were having technical difficulties and he was the on-call scut monkey for the weekend. He drove me into Norfolk and dropped me off at the MacArthur Mall while he went to work, then came and picked me up about 2 hours later. I shopped at Yankee Candle, one of my favorite stores, and bought festive Hallowe’en and Thanksgiving candles and accessories. I love having their fragrant candles with their unique scents, wafting throughout the house.

I just talked to my friend Shannon, who was was admitted to Duke yesterday as she is not feeling well. She was transplanted 3 years ago at Duke, her sister 5 years ago had her double lung transplant at Duke also. Shannon feels alone at Duke because her family is 4 hours away in Chesapeake and our best friend in Durham, Angie, recently died, leaving Shannon with no friends to call and come visit and cheer her up. So I’ll be going on a “visit Shannon” road trip tomorrow to Duke, to bring her some cheer and some Skittles. Shannon hates being so far from family, but Duke is the best place for her when she is sick, and it means leaving everything and just going. That I have a house in Chapel Hill for her family to stay at when they come into town, is very helpful and they appreciate it. So I’ll talk it over with Brian later and pack a duffle bag for a Shannon visit. Cool.

My sister Noreen, arrives on Wednesday from Toronto and then her husband comes a few days later to join us here. I am excited they are coming. We will lounge around and watch movies and swim. Flambé some salmon on the grill and add marinated new york strip steaks.........ahhhhhhh....it’s tough being on a diet when summer is such a wonderful grilling season. I’ll have to be back in town for Wednesday, to be at the airport, plus I have to see Dr. Randy Garnett on Wednesday, to let him decide if I should start on oral antibiotics for new sputum nasties I’ve been coughing (or rather gagging) out of my trach. Oh the joys of sputum balls... as they hurl out of your trach and land on whatever vertical surface is 10 feet away. It’s not nice when the sputum balls hit a cat, because it gets matted in their fur....but that’s another story, kiddies.  Hugs from Lori

August 23, 2005

I’m home from my road trip to Duke to visit with my friend Shannon. It was nice to be company for her and to go out for lunch with her. I smuggled in all kinds of goodies for her and we walked around the floor to see what “Club Duke CF” is like.....it is nice. There were more empty beds than full beds and quite a few admissions were lung transplant patients. Shannon and I even snuck away to go to South of the Boarder for Mexican food.

While I was there, I also spoke with the CF clinic and had them call in a prescription for Cipro for me. We know it might not be the answer for my declining pulmonary needs, but without an IV access now, I am not able to do home IVs to buy my some time and stay home. If the Cipro does not make me a whole lot better in 7-10 days, then I’ll have to consider being admitted for more aggressive antibiotics. Boo-hoo, as my sister arrives from Toronto tomorrow and I’ll be hanging out with her for a bit and will not want to go into the hospital. No way. I’ve had such a wonderful last 8 weeks of life and have enjoyed having my family here, that I don’t want it end due to CF---but it will. It always does. But Lord, can it please wait until AFTER September 5th, when everyone leaves?

Also, we have a visiting frog. Yes, a green frog. He’s been hopping in and out of our swimming pool every night for an evening dip for about 2 months now. Brian or I will be outside on the lounger just listening to the crickets and the bugs, with their symphony of songs in the night, then PLUNK!! We hear the water stir and the big frog leaps into the shallow end for a brief swim. He always jumps into the shallow end and then swims a bit, gulps down a few mosquitos and then hops out, going back into the bushes and the surrounding backyard forest.

Well tonight, Brian just came in to tell me he was going to go for a night time swim, but then her heard ......PLUNK.....and decided not to go in right now and share the pool with a frog. He came into my (home) office to tell me this. So now he is walking around in his speedo, waiting for the frog to exit the pool, and even then, he might not go right in. He’ll have to shock the pool first to get the froggie germs killed. Ahhhhh....such is the fun life we have here at Villa Morris-Hughes.

August 24, 2005

I had a good appointment with Dr. Randy Garnett today. I am profusely junky and gunky and have tons of sputum. It’s my typical MRSA sputum and in a week, if the Cipro does not work, it will transmigrate into a nasty aeruginosa and stink like a cepacia. The lab will tell me what is growing next week. Dr. Randy asked if I thought I ought to be admitted for a tune up. “Nope”, I said, “I’m not blue yet”. True. I was still pink and my oxygen saturation was 92% on 6 liters of oxygen, so I bumped it up to 8 liters to pink up more and avoided a possible admission. I am very sob when walking up an incline, but not yet when walking on the level, so I am not yet sick enough to go in. Plus, I am not waking up from sleep gasping for air, so this is good for me and I am holding on, running around doing important Lori things.

I’ll see him again in October, and what a busy month as I’ll be in the Bahamas with sister #5 then off to Toronto for a wedding and time with my family, so I don’t have time to be on bed rest. OK...sister #1, Noreen arrived today and had a great first day and she soaked in the hot tub and her weary bones felt better after a whole day of flights and travel. What a trooper. More tomorrow.

August 25, 2005

We slept in late today and the sun was shining so brightly, it engulfed my bedroom in a halo of welcoming light. Got up, did the CF Vest therapy and answered e-mail. Fed the cats, watered the cats, cleaned up their poop. Then went shopping. I needed to buy some more fake pumpkins for my Thanksgiving display so I did that and then bought groceries, and bumped into my Sunday school teacher in the bakery. She said I did not look well, and my sister said I ought to be going in soon for a tune up but am avoiding it because I want to be home with my family while they are visiting. Point taken. When it gets to the point that I am a dusky cyanotic hue, I’ll go in.

Came home, hung new flags from our lampposts and had a nap. Brian and Noreen are in the theater watching a movie and I’m writing this update then going to bed, exhausted. I slept with the BiPap unit last night on a low pressure support setting but I didn’t feel it did anything beneficial. Hmmmm...maybe I don’t have it programmed correctly, as it should make some of the effort to breath less of a struggle, as it will stent open my airway a bit longer and allow me some rest. I’m not an engineer, just mucking around with stuff to see if it works. What’s the worst it can do? Kill me? Hugs from Lori

August 27 2005

Another nice, lazy do nothing day at our house. It was awesome. My sister went for a swim and then read a book for a bit, then fell asleep under the cabana. Brian and I went to welcome a friend home after a very long bike ride. BJ road his tandem, 2 person bike from Oregon to Virginia Beach, a journey taking 90 days and around 3500 miles, all to raise $$ and awareness of Cystic Fibrosis, to fight this nasty disease. So today, BJ rode into town and dipped the front wheel of his bike into the Atlantic Ocean...he was home. What an amazing young man, doing this adventure to honor his life long pal, Stephen Neller, who died 2 years into living with his new double lung transplant. Stephen had CF. He was my friend. Go back in this journal to July 2003 and read all about him. It was so nice to see his mom, and her parents there. Photos of Stephen decorated the room and BJ had a slide show documenting his journey. Another hero doing something for CF. His web site is 4pedals.com

I will call for my sputum results on Tuesday then make some decisions based on that information. I think my sputum is resistant to the antibiotic Cipro as I feel no better. I’ll know in a few days. Hoping to get to church tomorrow, if I am not coughing out a lung. It really interrupts the sermon when you do that. Ho hum...bed time now for Lori.

August 30, 2005

And the bugger is.....Gram positive Cocci. Yes friends, the goop growing in the lab turns out to be a garden variety bug. Dr. Randy Garnett does not think it is a MRSA species. In this family of bugs, it could be either (or all) of the following possibilities:

• Streptococcus (e.g. Streptococcus Pneumoniae)
• Staphylococcus (e.g. Staphylococcus aureus)
• Enterococcus (Previously Group D Streptococcus)

The good news is that the cure is a pill called Avelox and I’ll start that today. I have not done any better on the Cipro so I’ll stop that now. Bad Cipro, no good Cipro. My sister and I hung out yesterday, and she said I am looking like it’s time to go in for a tune up soon. I told her I think so too, possibly, but that as I am still pink and that is my indicator, I can hold off at home longer. The fun continues and now I can spend more time pumpkin carving. Hugs from Lori

September 1, 2005

My sister Noreen, brother in law Gordon, and I went to Busch Gardens, Williamsburg today and had a wonderful time. The park was not crowded, and it was a beautiful sunny day to be there. The flowers were blooming so wonderfully and the gardens were so full of vibrant colors. I rented an electric scooter for the day and loaded up my liquid oxygen on the back of it. That is the only way I can endure an outing like this, to save precious energy and oxygen by scooting along. We stayed for 8 hours, so it was a full day. We don’t do rides, but instead, catch all the live shows and performances. Here is a photo of them stomping grapes in the winery of Italy. We had a wonderful time and ate way too many things. From huge cotton candy on a stick to funnel cakes topped with strawberries, to chicken parmagen to Jell-O, it was a great time to be with family and to share happiness. I felt well and endured the very hot, humid day by gulping down water and salt tablets to get ahead of the profuse sweating we cystics do. New memories were laid down and smiles were in abundance. Amen Lord Jesus, for this memorable day with my sister Noreen and brother in law Gordon (Brian had to be at work today, so he could not join us).  

September 3, 2005: Hornet Stings 101

Today, I was stung by 2 hornets and had to go to the emergency room stat. I was checking the hot tub outside to make sure all the jets were working and when I lifted up the lid, underneath the skirt, a group of hornets swarmed me. 2 stung me, in my right hand. I called for Brian right away and asked him to call 911. Pretty dramatic, eh? But you see, in September 1998, I was stung by 1 lonesome bumble bee, and ended up in the ER, the CCU, and on a vent for three days, so with that experience under my belt, I began to carry an Epi pen in case I was ever stung again. Now, 7 years later, revenge of the hornets.

Brian was amazing and expertly and rapidly injected my right upper arm with 0.5 mg of Adrenaline and 50 mg of Benedryl. We applied ice, cranked up my oxygen to 8 liters, and waited for the EMS guys to come. They were at my house within 4 minutes. My sister Noreen was quite upset, but held it together for me. She said my lips were blue and she was scared. She thought back to the bee sting years ago when she saw me in the ICU very sick, and thought the same thing would happen again. My right hand was swollen and my face was puffy. The medics said the lower lobes of my lungs were terrible, but at least I could breathe. Amazingly, they found a tiny little vein in the crook of my right elbow and stuck it. I received a few rounds of decadron (an IV steroid), benedryl, tagamet (both are anti-histamines) and inhaled Albuterol. All this in the ER took care of the anaphylactic reaction and amen for the fact that my airway was not compromised and I was able to support my own respirations without ventilator help. The ER attending doctor said to Brian and I, that the very quick interventions of the Adrenaline and Benedryl injections were actions that saved my life this time. Brian stepped up to the plate and took control, and humbly saved my life today. I love you, Brain Hughes Just another reason I love Brian and consider him my soulmate. After a few hours in the ER, I asked to be discharged and Dr. David Pitrolo agreed. Brian brought me home and tucked me into bed, as the Benedryl was doing its job and I was tired.

So on this glorious sunny, Labor day weekend in Chesapeake, I am thankful for Brian who acted with a clear head and gave me the intramuscular shots I needed, and big thanks to Tim Rogers, the EMS medic at Station #5 in Chesapeake who triaged me and rushed me with lights and sirens blaring to the closest hospital. Another answer to prayer was that the Great Bridge Bridge not be up for its hourly lift, as that would delay the ride to the hospital for 20 minutes. The Lord saw to it that the bridge lift was down and we were able to speedily go through without waiting for the bridge lift. Thank you Lord for that small blessing.

My sister Noreen and her husband Gordon prayed for me and for the wisdom of the medical team, hoping I would not end up on the ventilator. She called home to tell my sisters in Toronto, asking for prayer.

When I arrived home just 4 hours later(!), I sat down and cried while praying, thanking my Lord and Savior for not allowing this to be a lethal sting. We have all heard about people who are stung and drop dead, but this time, I survived. It was not the Lords will for me to die today. Thank you for that blessing. I’ll crawl back into bed now and let the Benedryl work, as my eyelids are drooping and I’m tired. See....the fun never stops here at our house and I am so very thankful that I am now home and in my own bed, and not dead. No toe tag for me today, Amen!

September 5, 2005

Well I’m over my hornet swarming and none the worse for terror. The ambulance bill is $400 (to go 11 miles) and since I was in trauma room 1, the highest status of emergent care, I can expect to be billed around $7000 for the treatment. We are fortunate to be covered under a good insurance program, so please don’t take this as a complaint.

I am still fighting, but losing the battle with this current chest infection and I am gearing up for an admission in the next few days if this does not turn around and get better for me to breathe. I slept on BiPap last night with a Pressure Support Ventilation setting of 10 and I actually had a very good sleep. I was not struggling or indrawing to breathe, and I was able to lay down at a 30 degree angle to sleep, so perhaps I’ll break this negative vibe and start to feel better.

I showed my sister a big glob of sputum that I hoarked out of my trach and she almost passed out. She turned white and was nauseated. Guess it kinda made her woozy. She was surprised that that ugly green stuff was living in my lungs. I was just 6 years old when she got married and left home, so we did not really grow up together and so my CF was just something there in the background that made me sick sometimes. Now she has come full circle these past few years and knows this is a fatal disease.

Today is Labor Day so we are taking the day off and doing nothing. Very minimal labor for us today. Most days are like that for me anyhow, when I am lazing at home not working. We are going to have a BBQ and have the neighbors come over for seared salmon in lemon sauce and new york strip steaks. My sister Noreen and my brother in law Gordon, have to fly home to Toronto tonight. It was so awesome to have them stay with us and we are planning for their return next year (Lord willing) when we hope to go to Williamsburg for a shopping spree. I felt very comfortable with them here and thoroughly loved that I could go nap during the day and just drop out and leave them to be. No supervision or anything. It was nice. I love my sisters (all 5 of them) and having my Scottish brother in law here was great for Brian too. They joked around and had fun.

I will call the pulmonary service tomorrow and seek their advice about being admitted soon. I hope I will get a doctor from the group of 10 who I like and can work with. Sometimes, I have delayed being admitted for 24 hours until a doctor I like is on call. You can put your life in danger playing this roulette game, but some doctors are better than others and that’s how it works. We cystics do it all the time. Don’t like the doctor on call? Don’t get admitted that day. My big decision will be...will I choose to be admitted to Duke (4 hours away) or locally, to Norfolk General. Hmmmmm.....more later...Love from Lori.

I’m home...September 29, 2005

So where have I been these few weeks? At Duke. Yep...Was admitted to Duke University Medical Center for a CF tune up. And it was awesome! Man.....have they got their act together. They actually have a CF Care Plan...something my home hospital does not have, and with just 3 people with CF at my home hospital, they will never have a CF care plan...but Duke has been in the CF business for some time and gets it done right. First thing...I called the CF clinic and spoke with the CF Nurse, Edana, and told her I was not well and was on my way. In about 15 minutes, she called back saying to come on right through admitting as they had a bed for me on the Pulmonary Unit. No having to spend 24 hours on a gurney in the ER while they try to figure out what to do with me. Nope. I was admitted after 7 PM and it was to the Pulmonary Step Down, as I was going to be on the ventilator, so they can keep a more watchful eye on you there.

The very different thing at Duke is that the Physical Therapists come to do chest physio on you every day, unlike home, where you are lucky to get a Respiratory Therapist who will beat on you just once a day. As many times as you need chest physio, they are there to do it. In the afternoon, the Physio Therapist named Tamara, came to take me to the gym, where I walked on the treadmill for 20 minutes. It was good for me to keep my body active as your muscles get deconditioned from lying around all day.

I had to go to the OR for trach surgery. They roto-rooted out the granulated tissue in my trach and placed a #8 cuffed trach, and sewed it into my neck. OUCH! That surgery really hurt! My voice is so skewed and altered now that if I can’t tolerate it, I’ll go back to my #8 uncuffed trach later, but for now, with the cuffed trach, at night I inflate the balloon and then I can go on the BiPap and not have any cuff leakage. It is working for now. At Duke, I was on the vent from 10 PM until 6 AM every night and it was good for me.

My CF attending doctor was actually in Mississippi, helping out with the medical management of the Louisiana Hurricane Disaster, so instead of being admitted under Dr. Peter Kussin, I was seen by Dr. Tapson and then Dr. Govert. I now know why my friend Angie Hill (RIP) said Hubba Hubba about Dr. Tapson. Hubba Hubba Big-Time! Then for weeks 2 and 3, I saw Dr. Govert. He is also funny, when you engage him in conversation. I liked him and we even talked about my monstrous generator here at home just in case we have a hurricane, then I’ll be all set with my BiPap working and the home theater showing movies 24/7.

OK...so I had some trach issues but ENT fixed that. I had visitors from my home church come to see me and I received a lot of cards from people at my church. Duke is 4 hours from home, and some people at my church choose to drive to Duke for their expertise and medical knowledge. Let me tell you, Gladys St. Sing threatened to whip my Canadian butt if I were discharged and drove right the way home! So I slept over at my Chapel Hill home and recovered, then drove home when I felt better. Gladys, Judy & Melba also brought Brian and I hot dinners to enjoy....Thank you ladies for your show of Love to Brian and I. Brian came down to Duke on weekends and the nurses brought in a roll away bed for him. It was nice to have Brian with me. I can’t go this journey alone.

I only had IV access via my femoral vein so the intern came and got it on the first try and for the whole stay of 21 days, the femoral access was wonderful. We did not have to change over the site after x many of days and I was able to get through the whole tune up with just one femoral line puncture. Amen! I ran a course of Vancomycin, Zosyn and Tobramycin, then later it was changed to add Zyvox orally and Bactrim DS orally, while still infusing Zosyn and Tobramycin. I grew out my regular pseudomonal nasties and they responded to this aggressive 21 day course of antibiotics. I had this neat 4th year medical student named Thomas John VanDer...Something... and he worked well with me. He is 29 and wants to be an Anesthesiologist. It was neat for him to see adults with CF, and in the end, he pulled my triple lumen femoral line out. Cool! So there you have it...a synopsis of the last 3 weeks at Duke. 

Oh Yeah....as if to spite Dr. Randy Garnett, Shannon was admitted to the room 2 doors away from me. What a hoot we had, the 2 of us, hanging out and fooling around. We used our meal passes to go to the cafeterias and then took the monorail to the Food Court in the other buildings to check out their menu’s. We had a good time together and were laughing that if Dr. Randy could see us now...oh ohhhhhhhh....we would be in deep trouble!

I was discharged while Shannon is still at Duke. She will be home soon.

My friend from Pulmonary Rehab, Michelle, came to visit and we had a nice time to catch up. She lives in Oregon and came to Duke for her second Double lung Transplant for CF. She is doing very well and living life fully. She stayed overnight at my Chapel Hill home and in October, we will get up in Chapel Hill for CF clinic and she’ll fly in for Transplant clinic. I like my new friend Michelle. She is grounded in reality and takes life as it comes. Her first set of lungs lasted 10 years, then she needed new ones, so Duke gave her them. Amen for her donor. OK.....I’m home, catching up on life again, going easy as I recover, and in 2 weeks, I will be in Nassau Bahamas with my sister Vicki. She is flying 3000 miles to be my cabin mate. What precious time we will share together. Then, back to work at the job I love, when I return, taking death calls for the Medical Examiner.  My world is perfect right now. Bring Life On! 

October 8, 2005

Tomorrow, my sister Vicki and I head out on a cruise to the Bahamas. We board right here in Norfolk and cruise for a week. We have been planning for this since February and it’s finally arrived. I am packed and ready. Vicki arrives tonight, after 3000 miles, 14 hours, and just peanuts on the plane.

I am feeling well, and praying for my continued good health. I have ordered liquid oxygen on board from my local company, Eastern Oxygen, and then have arranged for e-tanks to be delivered to the Atlantis hotel, where we are staying for a night while in Nassau. I have tons of trach supplies and a homicide book to read, just for pleasure.

The weather in the Bahamas in always nice. Yesterday here in Chesapeake, it was 83 degrees with sunny skies. Rain is moving in but it won’t dampen our cruise. Bon Voyage!

October 19, 2005

Back from my trip to the Bahamas with my sister Vicki, and I had a tremendous time. I’ve been home for a few days, but have been too busy to jump on and catch up with you. Basically, it was wonderful and I didn’t kill myself doing this. I slept every afternoon, was 98% compliant with using my oxygen, and got a nice sunburn (ouch). I have pasted pictures on my Photos page so you will have to go there to check out the fun we had. We stayed at the Atlantis resort for 2 days and it was too huge to see it all, and also very expensive there, but it’s something you do once in your lifetime, eh?

Vicki flew home, back to British Columbia, and had to have been exhausted after 16 hours of flying. Amen for my sister Vicki (she’s #5) for coming all this way to make MY dream of seeing all my sisters within a year, happen. Now I can go off and die. (CF humor here) My sister Noreen, #1, almost smacked me so hard over the phone when I told her that. Just joking friends....having done what I wanted to do, it is not any sort of death wish I have to now lay down and wake up dead.

My recent 3 week tune up at Duke, certainly helped put some wind back into my lungs and made this possible. Which brings me to today: I had a pulmonary appointment with Dr. Randy Garnett and it went well. He said my lungs sounded so much better than before and were not “junky” nor sounded like a “toilet” (his words). What was I doing? I filled him in on the recent tune up at Duke and that things worked out for me there. He asked me to ask the Duke CF doctor, what possible combination of oral antibiotics I can go on for a rotating trial, to see if they help. Like a month of Cipro, Bactrim, Zyvox, or what else?

I reminded Dr. Randy Garnett that for the past 5 years under his care, I HAVE been on various rotating oral antibiotics, but that when they fail to make me better, so then I always have to go on IV meds. I’ve done all this oral stuff at home, and then go on home IVs, and either it works, or it doesn’t, and then I am back being admitted. Without IV access in the home care setting now, all IV meds have to be done in the context of a 3 week tune up in the hospital. It has taken 40 years to get to this, but hey, most people with CF at this age, are dead. There are about 8000 adults over age 30 living with CF.

Also, being on a jury rigged BiPap machine at home has helped. BiPap is meant to be used with a mask over the face/nose/mouth. It is not meant to be used connected to a trach, but in doing so, I can manage this at home and not be in the hospital for night time pressure support. Using this “invasive” ventilation method at home, decreases the work of breathing and improves alveolar ventilation, while at the same time, resting the muscles used to breathe. This improves gas exchange when using BiPap because of the alveolar ventilation increase. Crazy, eh? When you adjust the PEEP, then the work of breathing decreases by overcoming auto-PEEP. In the end, I rest better, wake up with less morning headache, and feel as though I have not been up hunched over to breathe, when I ought to have been sleeping, and all the time, with the BiPap on, I was doing just that--sleeping. Voila.

Dr. Randy says my trachea is very floppy and mushy, so breathing quickly or being short of breath, makes it collapse on itself, which further makes me think I am going to die right then. The solution is to stent open the trachea and apply positive pressure. The best part is that my morning headaches are nearly almost gone. About 3 out of 7 mornings I don’t wake up with a hypercapnic headache.

I am using 8-10 ccH2O of PEEP with a Pressure Support setting of 12-16, and am investigating a Pulmonetics vent for home use. We’ll see. I’ll ask around about it. Anyhow, I have many blessings to be thankful for and hope I can continue to feel well so I can be in Toronto for a wedding soon. Now, go check my Photo page.

Early November, 2005

I’ve had a few tough days lately. From my trach bleeding, to going down to Duke for their help, to not feeling well enough to fly up to Toronto for a wedding. Whew. My life has been busy. Maybe too busy~since I just need some old fashioned rest.

I received the hospital bill for my 22 day stay at Duke and it was for $127,000+. We have insurance, so this is not a complaint. We are only out of pocket $3400 for the whole bill. Amen we are covered. While down at Duke seeing doctors, I also stopped by the Pulmonary floor (Unit 7800) and saw internet friends Bill and Diane Detmer. He is a double lung CF transplant patient a few months ago and is slowly doing better after every complication in the book. I drove home Monday as Shannon was checking back into Duke for issues related to her recent surgery. Her mom bunks at my Chapel Hill home while there. I move out at the end of the year and that’s it...done renting the Chapel Hill home for a transplant that never happened. Even this was the Lord’s will, that I not get new pink lungs.

I am home, back in my own perfect bed, with 1 or 2 kitties sleeping on the pillows beside us both, and taking Zyvox antibiotics, then Bactrim, and hoping I feel better soon. I have been “resting”, napping afternoons, and letting my body fight and heal. I have some exciting adventures coming up in 1 week and I need to be 100% better for it. OK....time for bed. I can’t get myself too tuckered out.

Hugs from Lori

November 5, 2005

It’s 4 AM and I am awake, at my computer. I am coughing up a lung. It is getting better, though. My coughing is so annoying and my chest wall, is so painful from incessant coughing, that I have slapped on another Fentanyl patch and I am squirting liquid Lidocaine down my trach for cough relief. The patches I was doing were NOT touching my thoracic pain, so I had to up the dose, and as I cough so much, I turn blue, then my eyes water and run teary fluid, and I am short of breath. This is a never ending cycle and my sputum is SO THICK, I can’t even clear out my own trach tube. Oh the joys of living with CF. It reminds me every day that I am its slave. That my genes are flawed and that despite all this, God Loves me just as I am. I am His perfect creation and my struggle with CF shapes my character and earns me brownie points for empathy. Oh what a joy it will be to wake up alive in Heaven, without CF. Without any disease. To be whole again in spirit and soul, and to be healthy for eternity. Bring it on! Sunday School is now over....

Every few minutes, after coughing so hard, my trach tube is “clogged” with thick, thick, did I say thick? yellow/green sputum. Trying real hard to cough it right out, when I breathe in, I just suck in the globs and they get stuck. So I try so hard to patiently wait and breathe through my nose, get up enough lung reserve, then try so hard to hoark that loogie right out. Most times, it (the glob of sputum) hits the bathroom mirror, or sometimes, my socks or shoes, all depends. But watch out when...” thar she blows!” Projectile sputum. Gotta cough it out. When it clogs the trach tube, I struggle to breathe, so I go to my bathroom sink, take the velcro trach tube ties from around my neck, undo it, then pull out the whole trach. Swiftly I reinsert another, and then begin to clean out the clogged up one. I have 6 inner cannulas working on a rotating shift and keep 4 in my pocket in a zip lock baggie. Even at a red light intersection, I can change out the clogged inner cannula in 16 seconds. I’ve had to do it. Today, was the first day out of my house in 5 days. I had to get to the bank, so off I went.

The last 5 days, I have been doing all my therapies, meds and indulging in daily afternoon naps. All with the goal of making me feel better for a trip to Disney next week with my friend from work, Donna. Brian stays at home and goes to work, while I go off and do Disney. I so badly want to go and to not let CF win another one and take another spot of joy away from me. I have been on my knees frequently this week, asking the Lord to give me renewed strength and to keep me free from any fever. I was not well enough to fly to Toronto 10 days ago, but think (or am I just kidding myself?) that I am feeling better now and can do this trip. Well no fever, my sats are 92% on 6 liters by trach, and I am doing better. Am taking Zyvox and Bactrim orally and hope I am on top of this. I want to go to Disney. Another day will tell if I am fine and can begin to pack. Life is good. I am blessed.

November 8, 2005

I am packed. Once again, life is good. I slowly got better but was right on the brink of being admitted. I wanted to stick it out and go to Disneyworld, not be back at Duke for another 3 week tune up. I am at a manageable point in my lung disease where I am not sick enough (today) to be admitted so I believe I am well enough to go to Disney instead.

My sputum is not as thick and sticky, and I am at the best point I could be at to go. I called to confirm that all my oxygen supplies will be delivered there now that I am going. Brian has signed off on me going, knowing I am well enough to go, as long as I rest in the afternoons and do all my therapies and treatments. Fair game. I am off for a week. Check in next week to get a report. This is going to be FUN! Hugs from Lori

Middle of December, 2005

I’m home. Home from the Duke University Medical Center. It was a long, hard stay. My head is not out of the clouds yet, meaning I am a bit fuzzy still, but this time, I did Disney and came home right to be admitted to Duke. I was quite sick and getting IV access was a nightmare. The wretched medical resident came in at midnight to poke my left groin for a femoral vein and after 2 failed attempts with me screaming for her to cease and get out of my room, she left. She hit my nerve twice in my leg, and missed the femoral vein both times, and I felt so violated and hurt I screamed for her to stop hurting me and leave. Next morning, a new resident comes and using a doppler ultrasound, he gets my right femoral vein on the first try. Amen. The rest of the stay was the usual stuff. They tried to get me to lay quietly into the MRI scanner but no way! I could not be encapsulated into that death trap to get the MRI scan of my upper chest and veins done. It would have taken an hour to do the scan of my veins of my upper arms and chest to see if I have any available for another Medi-port. Instead, they had anaesthesia come and knock me out and then do the scan the next day. Cool! Dying should not be so painful. Dr. Kussin (my CF doc) said next time, they will knock me out under anaesthesia and go find another vein without all the trauma.

My angel was a new friend named Jennifer Caulfield. She works at Duke and has a niece with CF, so she is sympathetic to CF. She was my real Angel because she washed my laundry three times and brought me clean undies to wear. Females know how important that is. She held my hand and sang ‘Jesus Loves Me’ as I was knocked out for the MRI scan and she helped me throughout my stay. Brian came to Duke on weekends and slept over with me in my room, but this time it was 23 days and a long stay for me. With no veins left, things are desperate. I only have a femoral vein to tap into and so Dr. Kussin said to come back next time I am sick and to let the Duke Doctors work their magic and find another vein. Without a good vein, no antibiotics can get to my nasty CF bugs. What to do? Go back to Duke and let them find another vein, according to Duke.

I also had to get the house in Chapel Hill ready to turn over to the owner as my year long lease ends December 31, 2005, so I had to gather up a few things and bring them home with me and then Brian and I will go done on New Year’s Day to help move Melissa and her stuff over to her new apartment. The Chapel Hill house was a blessing and was amazing, but it was just for transplant purposes and since that did not happen, I had to give the house up. It was a hoot while it lasted.

I am now home with a new Pulmonetics LTV 950 ventilator, prescribed by Duke. It is needed. It arrived at Duke for me to use a few nights before I went home with it. The home care company I have here has come over to set it up for me and now I’ll sleep nights on this new ventilator. It is my “new set of lungs”, so to speak. The cost of this new unit is $17,000. OK....gonna close here as it is nap time for me now. Tomorrow I see Dr. Randy Garnett for his wisdom and advice. Oh Goodie! Love LorixoOXo

December 13, 2005

Saw Dr. Randy Garnett yesterday at his new Norfolk office and he was pleased that my lungs sounded well and my oxygen saturation was 100%, on 8 Liters of O₂. He said he thought I was out there doing well, as he had not had a “distress” call from me, but exactly the opposite: I was at Duke. Duke has direct admission for CF patients, so you skip the ER and go right to the floor. Not at Norfolk General. Duke has 200+ patiens with CF, not so at Norfolk General (maybe 3). Duke has a directed CF care plan, not so at Norfolk General. Duke KNOWS CF. It’s hit and miss at Norfolk General. It’s a no brainer Brian and I are more comfortable in the Duke medical setting, one that really knows how to treat CF.

Dr. Randy asked me to give Norfolk General a try again. I told him that Duke KNOWS I have very limited venous access for an IV and goes right for my femoral vein, while at Norfolk General, they don’t believe me and have to use me as a pin cushion for 5-6 needle sticks before they realize I have no veins to hit. By then, I am crying and in pain. I know my body. My veins are poor, so why do you have to poke me 6 times to prove you better go for my femoral vein? Duh. I told Dr. Randy this was reason enough to keep me from returning and he wrote me a note on his prescription pad that said “Lori Morris-Hughes: Please use femoral veins for IV access. She has NO upper extremity vessels that are patent.” Hey, this was a smooth move for him to do this. He acknowledges my vein issue and said I ought to try Norfolk General next time. We’ll think about this. Hmmm.....

My oxygen saturation was perfect: 100% so Dr. Randy said I can titrate the liquid O₂ down a bit, as long as my numbers stayed above 92% O₂. So I left there on 4 liters and not 8.

I am on rotating oral antibiotics at home. first 2 weeks of the month on Zyvox and the last 2 weeks of the month on Bactrim. This was Duke’s doing but they are leary that I’ll develop resistance down the road and be in a worse off position. Right now, my sputum is sensitive to Zosyn (an IV antibiotic which I do well on) but if I lose this sensitivity, it will be difficult to find a drug cocktail that works. It’s 6 of 1, half dozen of the other. Right now, I am home and feeling well. I pray I can hold onto this for some time. No travel plans for me soon. Just enjoy life at home with Brian, and return to work in January. All will be well then. More later, Love Lori xOXo

This is NOT a holiday tree....

This is a Christmas tree.
It is not a Hanukkah bush,
it is not an Allah plant,
it is not a Holiday hedge.
It is a Christmas tree.
Say it... CHRISTmas , CHRISTmas , CHRISTmas

Yes. CHRISTmas - celebrating the Birth of Jesus Christ!!!

Take a stand on this!

December 26, 2005

Brian  and I have celebrated a wonderful Christmas holiday together and have reflected on how powerful the birth of one special baby has changed the course of eternity forever. Born in a stinking stable, even the Jews themselves didn’t expect their Messiah to come into the world this way. But the gift is what counts, and how He came to be, is the Miracle of Christmas.

We went to church Christmas morn then over to his sisters house for brunch. Then back home to our house to get into pajamas and watch a movie and relax. It was a rainy Christmas day here but no snow. I wished I were back in Toronto, on Livingstone Avenue, gathered around the fireplace while father read the Bible. Then we would open the gifts and have a wonderful family time together. Mother always prepared a huge Christmas dinner with plenty to spare. I loved it then, and yearn for it now. Both my parents are in Heaven, having the best Christmas ever imaginable, Christmas with Jesus.

I am doing well and have no complaints. Occasionally, Brian will ask me to put on my oxygen as he perceives my lips and fingernails to be blue. I fuss, get out the pulse ox, and when he is right (-he usually always is-), I comply. Then I hug him for caring.

Lord, I am thankful for all the gifts I have and for the husband you picked to for me. Continue to let me feel your presence each day and to grow fonder and sweeter in my love each day for Brian.

Happy New Year!

Love LorixOXooo