Welcome January 2004!

Today UPS delivered a neat thing: a new ThAIRapy Vest! The Vest is a more effective way to do chest physiotherapy. No more lying upside down on tilt boards to be whacked breathless. Originally, it was exclusively marketed and used by those with CF, but now it is used in many other pulmonary conditions. The new, lighter Model 104 (which I have) consists of an inflatable vest connected by two tubes to a small air-pulse generator. It weighs 17 pounds. This model is quiet and easy to transport, allowing me to receive effective airway clearance therapy at home, work, or while traveling. When I am admitted for a CF tune up, we bring The Vest in to the hospital to use it.

  How does The Vest system work?

The air-pulse generator rapidly inflates and deflates the vest, gently whacking the stuffing out of you! This creates mini-coughs that dislodge sputum from the bronchial walls, increase mobilization, and moves it along toward the central airway so you can hoark it up and out.

Treatments are easier for me

I use The Vest without any help. Unlike chest physiotherapy in the old days, The Vest does not require special positioning or breathing techniques. The technology is technique-independent because user or caregiver factors do not compromise its effectiveness. My treatment lasts 30 minutes 4 times a day.

I had heard from the CF internet grapevine this newer, lighter model was available and so I asked Dr. Randy Garnett to please write me a prescription for it. Then The Vest company had to petition our insurance to pay for it and Blue Cross Blue Shield agreed. The cost was $16,000 US. I did have the older, very heavy, 35 pound Vest during the previous 4 years. When I was well enough for it to work, it did a good job. Some times, I was too short of breath, or had hemoptysis, so on those days, I skipped the treatments. I took The Vest on a cruise to the Bahamas, to Disney World, to the British West Indies...all over, plus it has the knocks, scrapes and dents to prove its been a world traveler. Thank you Dr. Randy Garnett and Christine Meyer at The Vest company for getting this new system into my home quickly.

Other News: I am not having an easy time breathing. Just nasty sputum and with it comes a very fetid stench from my Burkholderia cepacia friends hanging on for their dear microbial life. Drats. Every cystic is intimately aware of their “bugs” and the havoc they can wreak on us. Here is a white blood cell attacking a nasty germ. That’s what I need to happen. Dr. AJ Quaranta will squeeze me into his very full Monday morning schedule and offer treatment suggestions. I just finished 3 weeks of IV antibiotics and they had no beneficial pulmonary effect. Today, I was so tired and short of breath all I wanted to do was stay in bed all day. But no, I got up and made myself do things. I did 6 Vest sessions to help bubble and bubble, toil and trouble, the nasties right out of my chest. Tomorrow is the weekend, and I have no plans, other than to continue to breathe, and avoid a toe tag.

January 5, 2004

I had an early morning office appointment today with sweet Dr. AJ Quaranta and we agreed (imagine that....we both agreed on something) I’d go back on another round of IV antibiotics as the last round virtually did nothing beneficial for me. So the home care pharmacy will deliver IV Meropenem and Cipro for me to infuse. Oh goody for me. Now I can look forward to diarrhea, vaginal yeast and night sweats. What a real winner I am (dork, dork, dork). I am tired, sleeping poorly, coughing too much, and short of breath, but hey, that’s on a good day! The best news is I do not have pneumonia and I haven’t had any hemoptysis. I had a chest x-ray and hoarked out sputum for the micro lab today. Surprisingly, my sputum didn’t look that bad. Now we wait to see which wee beasties are mounting their attack on my pulmonary parenchyma this time around. I’m sticking with my old, very dear and too familiar, gram negative pals, the Burkholderia cepacia species, as they always give my sputum a very characteristic, rotting/fermenting vineyard taste. Dr. Randy “the Rat” Garnett once commented that my sputum smelled like garlic. OK. Today, Dr. AJQ very clearly opined that he would prefer to admit me (yikes!) to Norfolk General for a pulmonary tune up, but I very politely declined his offer. No thanks. Rain check please. Do not pass Go, do not collect $200.

Instead, I’ll stay home and rest. Increase my Prednisone from 20 mg to 40 mg for 3 days, then taper it. I’ll let my body mend and expect this next round of antibiotics will help my symptoms decrease. I can always pack more moving boxes for our new house move on January 31st. If I am clinically worse in a few days, then I’ll touch base with Dr. AJQ. I do not have a death wish, and I usually know when I am in over my head and need help. Maybe then, I’ll agree to be admitted if it comes to that. It won’t. My best CF friend, Shannon, is trying to keep me in line and beseeching me not delay an admission to my detriment. Plus, it’s my birthday in 11 days, and nobody wants to celebrate it in the hospital.

January 10, 2004

It's easy to give thanks when life is full of blessings, such as with a job promotion, on your wedding day, when you find the house of our dreams, or when something good happens unexpectedly. It is during these periods of joy, that we seem to flood God with overflowing praise and thanks. It’s something I am guilty of.

However, what about when life hurts—when we lose our job, a loved one dies, or when we receive a shocking, life-threatening medical diagnosis? What then? How should we react to these unstable, sometimes even tragic times in our lives?

One man in the Bible who knew all about tragedy, suffering, and hardship, was Paul. Yet, in spite of his pain, he kept God at the forefront: "Rejoice always; pray without ceasing; in everything give thanks; for this is God's will for you in Christ Jesus" (1 Thessalonians 5:13). Then James says: "Consider it all joy, my brethren, when you encounter various trials; knowing that the testing of your faith produces endurance" (James 1:2-3).

For many people, this is an extremely difficult, even illogical, task. How can we thank God during painful, trying situations? One example of thankfulness in the midst of sad circumstances is my own struggle with Cystic Fibrosis and my lung transplant issues. It’s hard to see God’s plan for my life when I am in physical and emotional pain. One of the frequent questions I am asked is, "Do you ever just sit down and say, 'Why me, God? Why me? '" To that question, here is my answer:

You know what? I have those thoughts all the time. But it's "Why me God? Why did you choose for me to be born with CF, in a country with excellent health care, where I can learn about you, where I have a loving family, where we have plenty to eat, where I can make a choice of my career? Why did I have Christian, God fearing parents who wanted me to achieve the best I could? Why do I have a place to live when there are some people who live in a little makeshift cardboard box somewhere?"  If I write down the bad things that have happened to me in my life, there are very few things to even barely fill a page. But when I write down the good things God's done for me, my goodness! I just go on and on and on. I can fill page after page after page after page. That's what I say to people. "Why me, God? Why have you blessed me so totally?"

Think of some of the difficult circumstances in your life. Regardless of how they compare to my struggle with CF, how can you see the good in everything? How can you thank God for your difficulties, as well as your blessings? Remember, God has a perfect plan for your life. So in turning me down for a lung transplant in Norfolk, God’s plan for my life is set in motion. His good and perfect will is being played out just the way He wants it to. This temporary setback just closes one door but opens a window. It should not disrupt my confidence that He will provide for me.

Even in the most dire situations, we all have something for which to be thankful: our health, family, job, or a pillow to lay our head on at night.

Life itself is a gift from God. It's important that we face and endure the challenges God lays before us. When we seek an early escape, we cheat ourselves of what God wants to do in our lives. In addition, we cheat others of an example of hope and encouragement.

With my 40th birthday just a week away, I’ll strive to praise God in all circumstances. It's easy to thank Him for family and a table full of food, but remember, try to keep your mind on continually praising God. Begin and end each day with thanks to God for another day to breathe and laugh. Make it a point to thank God throughout the day for His grace and provisions in your life. You'll soon discover that He will guide you through life's most difficult circumstances.

January 13, 2004

I saw Dr. AJ Quaranta today for pulmonary follow-up and the good news is that I am at home and not any worse. The micro lab which examined my sputum did not report any of the bugs I am growing, aside from just indicating that there were both gram negative and gram positive organisms. Little good that does me. It’s like saying you have a tooth ache, but not telling your dentist which tooth it is, so he has to try to guess. Same situation with my sputum. They cooked it for a week and said, “Tada! It’s growing,” but they didn’t say just what it is growing. The simple solution to that quandary is for me to go to Norfolk General tomorrow and cough out a fresh, gelatinous mass of sputum for their delight and edification. When I was active on the Lung Transplant list, I had available to me the hospital micro lab which would specifically hold CF sputum for Burkholderia cepacia studies. Now that I see Dr. AJQ outside of the Transplant center in his private office, the micro lab they use is not equipped to do these cepacia studies, which is understandable.

My Prednisone dose will remain at 20 mg per day for the time being, with liberty to increase it up to 40 mg if acutely necessary. No fever to report (--I’ve packed the thermometers away for the house move--), and my white blood count was normal. Eating 2 bananas daily has kept my K+ just above 4, which is great for me as I tend to be kaliuretic (means excessive excretion of urinary potassium). I am doing 4 Vest therapy sessions 30 minutes each per day and have added an extra 2 sessions to contend with my state of feeling unwell. I have copious amounts of sputum which is difficult and tiresome to cough out. My chest pain, which is all muscular, stems from aggressive coughing, and that is where Percocet helps. The added benefit is that narcotics have as a side effect, constipation, which counteracts (in me) the diarrhea from the IV antibiotics, so that is a plus.

We also briefly discussed my trach. Dr. AJQ thinks it ought to come out. I said that until I know where I am going with both Duke and UNC in regards to transplant, that it will stay in. If neither of those Transplant centers take me, then I don’t see any advantage to return to Boston for surgery to have the trach removed. It is not minor surgery and the risks involved have to justify the end means. Just doing it to get it done is not a compelling reason for me to put my life on the line, undergoing a general anesthetic when I have crappy lungs. Ain’t happening. Secondly, it could also be that Duke, UNC or both, decide that the trach has to be removed prior to listing me for lungs. If so, then the end does justify the means, in my opinion. Get the trach out and get listed for lungs. No guarantees there will be donor lungs available, but you are ready, waiting and praying you get “The Call”. Thirdly, it could also be that Duke, UNC or both decide they will list me for lungs with the trach still in, and deal with it later. No arguments there.

My pal Shannon Parker and I are doing a Duke road trip on Thursday January 29th. She has a Transplant clinic appointment with Dr. Scott Palmer and we will make the drive down together. We’ll leave at 6 AM and get there early for her labs, then she sees Dr. Palmer at 1 PM. While there, we are going to meet up with another CF friend, also a Duke Lung transplant patient, named Laird. Laird was 50 years old (!!!!) when Duke gave him new lungs. He is flying in from Montana for his 3 year post double lung transplant check up. Laird and I have been e-mail buddies for 2 years and he does not sugar coat what having a transplant does to your body, physically and mentally. He is a good resource for me.

Then the next day, Brian and I close on our new house. The moving crew arrives and hauls us 7 miles down the road to our new home. Wonderful and awesome. So far, January has been a good month for me. OK...more later.

1 Corinthians 16:13
Watch, stand fast in the faith, be brave, be strong.

January 14, 2004

I went to Norfolk General Hospital today and gave a sputum sample for the micro lab. Now they will cook it and see which bugs are bugging me. 2 of my colleagues from the morgue treated me to a birthday lunch today. Thanks Donna and Joan. In 2 days I’ll be 40. Awesome. Another cystic pushing the upper limits of survivability. There are approximately 2700 adults with CF over the age of 30 in the US.

At 8:30 AM today, the doorbell rang. Fed Ex was delivering a birthday gift from my sister Dolly, in Canada. It was a huge box stuffed with Godiva chocolates! Brian wanted to open it right away and start eating, but I said we would wait and attack it tonight, after work. Thank you Dolly, Kevin and kids for sending such a “sweet” gift. 

A unique birthday card arrived today from my sister Vicki, in British Columbia, Canada. To honor my 40th birthday, she made a donation in my name to her local hospital, who are fund raising to buy 2 new ventilators for their ICU. What a perfect and thoughtful gift, made sweeter by the fact that my family knows I have spent many days reliant on a vent to breathe until I was well enough to do without it, so the thought that she took steps to help her local hospital buy a vent is a perfect gift to honor me. Thank you, my big sister Vicki.

I am still coughing out a lung and short of breath. At this rate, I won’t have enough wind left in me to blow out my birthday cake candles. Hey, I am getting older, so with that comes new aches and pains, right? In closing, today is the third anniversary of my fathers Home going to Heaven. 

Morris, Len     July 23, 1917 to January 14, 2001   Dad, 3 years ago today you went Home to be with Jesus. What an awesome time you are having, singing with the Angels and preaching on Fridays. Oh how I miss you dearly, every day. I know you have been keeping watch over me and I thank God always for the Christian father you were, who led by your example. Forever in my heart, until we meet in Heaven,                        Love your #6 Daughter, Lori

January 15-23, 2004

A few days ago, I was admitted to Club Dead. I was having a rough time just breathing. This has been going on chronically in the background for 3+ weeks and I was very tired. The ER doctor said this to me,” ..I have some good news, and I have some bad news. The good news is that you will live to turn 40, the bad news is you will celebrate it on the vent in the ICU”.

I agreed to be admitted to get over this confounding pulmonary nastiness. With our house closing in 2 weeks and then Dallas for a forensic conference in February, I needed to deal with this now and fast. I am infusing 4 IV meds at home and getting about things slowly. An interesting observation: my ER admission blood cultures came back positive for organisms. I was stunned by this! If it is true, it caught me totally off guard. I usually always have an inkling of when it could be bacteremia because I go through drenching sweats, fevers, shakes, chills and nausea. This time, I had NONE of those symptoms, yet they said I have bugs growing in my blood cultures. Oh this discourages me. There is however, some light at the end of the tunnel: I do have sensitivities to a few antibiotics which will treat this infection. My sputum is resistant to everything they tested it against and grew out Burkholderia cepacia (are you not surprised?) My white blood count was +43,000 on admission then dropped to 14,000, then back to 23,000 and now finally at 11,000. I am better, so something is working. Oh yeah.....I heard from the Duke Lung Transplant coordinator today and they have decided that when I get my weight down to 150 pounds, I will call them and go down for an evaluation. They said as it’s been 2 years since my first lung transplant evaluation work up at Norfolk General, much of it needs to be repeated. Then they will re-group, discuss my case again, and if I and they decide to go forward with transplant, Duke will then ask UNOS to transfer my time earned from Norfolk over to Duke and I will be activated on their list for lungs in North Carolina. This is good news. I know I can do it. Even here, at Norfolk General, my weight was one of the factors which made me a poor surgical candidate. It’s nothing new to be told this and it’s what I’ll have to do to feel better. They also said having this trach in does not exclude me from transplant at Duke. Their surgeon is willing to transplant a CFer with a trach. Just be a loser and drop the pounds. Wahoooo!!!! So my 40th birthday was spent on the vent. Big deal. At least so far, I’m surviving with CF.

January 27, 2004

I had an unscheduled appt. with Dr. Dorofi (ENT) today because I have been bleeding from my trach since Friday. Every time I cough, I gush fresh blood. I am gobbling down Percocet to reduce the coughing episodes with minimal success. Dr. Dorofi scoped me in the office today and found blood throughout my main stem bronchi, trachea and lungs. He said the whole area looked raw, cracked, bleeding and constantly oozing. I am using 40% humidity constantly at home via trach collar and his suggestion is to increase this to 65% and stay on that. OK. That’s something I can try.

My other concern is that the #8 uncuffed trach is now becoming very difficult to insert in my neck. Dr. Dorofi enlarged the stoma in the OR in October, and the scar tissue is now making it difficult to reinsert it when I have to remove it to clean it out. The last time I removed the trach to clean it, I got into a boat load of trouble--the transplant coordinator called a code to get help emergently and I ended up in the ICU on the vent. So having to take it out to clean it is only done when urgently necessary so I can breathe. Dr. Dorofi says there will a point when the #8 trach tube simply won't go back in the hole in my neck. Not a good thing. He said to have a #6 uncuffed spare on hand, to gently coax it into the stoma, then assess the urgency of the situation and go to the ER for the on-call ENT doc to assist/revise if needed. Yeah, OK. This puts me back in the position of presenting to the ER with yet another trach emergency and then yet again, garnishing ill-deserved attention for another stupid thing which might have been avoided. 3 strikes and you're out. I've had 2 trach ER emergencies so far. Loser Lori doesn’t want a third one. I don't like being the center of attention.

We move this coming weekend into our new home. Cool! But first, my friend Shannon and I are going on a road trip to Duke University Medical Center for her 2 year lung transplant check up! Yes---TWO YEARS since she received new lungs from a brain dead donor. Shannon is so remarkable. She is a mother, a wife, a college student, and a juggler. By that, I mean she is always going 24/7 trying to work her family, friends, college and a job into her very full, second chance at life. She is a poster child for the success of what transplant can promise. Her sister Lori, just made her THREE year transplant anniversary, also at Duke. Her parents each donated a lung lobe to Lori, rather than waiting for a brain dead donor, because Lori was not going to survive much longer waiting for a cadaveric donor. Organ donation and transplant truly are medical miracles. Dead men walking have had life restored, new breath in their lungs and more precious time to thank the Lord for a second chance at life. Amen.

February 13, 2004

Well, much has happened since my last journal entry. We moved to our new house despite the fact that the movers never showed up! I hired a moving company to move us, paid them in full 4 weeks prior, and they called 2 days before the move and said their truck was stuck in New Jersey in a snow storm. They said they would come the next day, on Sunday. Well, I didn’t want to move on Sunday, that’s the Lord’s Day, but that was our only option. The movers said they would be here at 9 am. By 12:30 PM, they still had not shown up. At 4 PM, they called to say they were six hours away. I FIRED them. In the end, it was our friends who came to the rescue. They rallied around us and gave all their muscle to help us move. Amen for sending the 3 guys--all named Jim, and also Joan, Lori, Dan, Alex, and special hugs to Krista and Gary for coming at the 11th hour to help us out.

Then to make me laugh in sheer delight to get over my moving misery, my friend Shannon arranged a surprise birthday celebration for me! What an awesome afternoon to have friends who love and care about Brian and I, come together to praise God I am alive at 40. In the US, CF adults age 40 and above account for just 5% of the 30,000 cystics out there, so I am a miracle. Donna Price was the wonderful hostess and the day truly made me so very thankful for these loving friends. These are the friends we will need when it comes to my transplant. Friends to help Brian through the emotions of it all and to pray for the family who lost their loved one so that I could have new lungs, and the same friends to encourage me to get home and return to Virginia. And also, friends who will be at my funeral, to praise God for the time I had on earth, and for the miracle of my life. Friends who will be there long after I am gone, to remember me and to honor me by signing their organ donor cards and talking about it with their families. Why let the maggots eat you up over 20 years while you rot in the ground, when you can give 7 people the gift of a second chance at life? Why allow yourself to be cremated in an 1800 degree oven without considering the joy you can give to 2 people who have eye disease, when with the gift of your corneas, they too shall be able to see all that life showed you in her awesome beauty.

In medical news....January 29th Shannon and I went to Duke. She had a great 2 year post transplant check up and amazed Dr. Palmer at how well she is doing. Shannon is going on an anniversary cruise in March with her husband Kevin. We wish we could join her. She is doing great! I met with Dr. Palmer (CF doc at Duke) who told me what I already knew....continue to lose weight and call us when you get to 150 pounds. It was exactly what I was expecting Duke to say. I was not looking to Duke to override what I already know--I need to lose weight to have a better post-op outcome. Period. Hey, I am an overweight cystic (goes with my rare CF phenotype) who would benefit from transplant, but my weight issues need to be addressed. At least they did not say they won’t consider my case because of the trach, which is the position Norfolk General took. So lose the weight  and pray for lungs. Hey, could have be much, much worse. I haven’t heard at all from UNC. Hmmm.......

I had a follow up appt. with Dr. AJ Quaranta Feb. 9th which went well. Nothing new, no surprises. Chest sounded better and I am feeling better. Blood work results were great. Chest x-ray showed nothing new or concerning. My hemoglobin is normal, which it hasn’t been in a long time. Plus my potassium is normal (...2 bananas a day keeps docs Randy & AJQ away...) I’ve been doing home IVs for 3 weeks now and my last set of blood cultures showed NO growth of any organisms after 4 days. Amen Jesus. My medi-port is not in the precarious position of needing to be removed with this good news. Still, we have to continue to be aggressive and complete 6 weeks of IV antibiotics to say we have given it the old college try, but the proof will be in repeat negative blood cultures, and in my self report of feeling better. My nasty days of a bleeding trach have stopped when I did as Dr. Dorofi advised--increase the humidification to 65% and that should super saturate my raw, bleeding trachea, which it has as I have not bled for 1 week as of today. Amen for another problem resolved. My Prednisone is still at 20 mg but I think I am ready to drop it. I forgot to get AJQs take on that at my visit yesterday ...silly me. AJQ thought I seemed “displaced/distracted”...but what it really is is discombobulation from the move. Trying to keep 2 households going and keeping up with all the contractors who have to come to each house is a busy job. (Our old house will go on the market March 1st--I needed the whole month of February to get it ready AND to unpack everything at the new house). Waiting for the cable guy, the Brinks company, the internet crew to lay down the lines 900 feet from the street to our house, the locksmith, the carpenter to build a custom bookcase for my office, the wonderful guys at Eastern Oxygen who swapped large liquid oxygen tanks from my old house to the new one, the insurance adjuster to write us a home policy, the home care nurse, the water delivery guy...all these services are necessary, but tiring. I go to bed exhausted every night then wake at 12 midnight to infuse my every 6 hours dose of the IV antibiotic Zosyn, and at 5:45 am, the alarm wakes me again for the next dose. None of this is a complaint, just an explanation why I am tuckered out. Sometimes my body wakes me up and says “Hey, you haven't had pain in a while, Lori. How about some pain?” There are times I can't breathe without a physical struggle to suck in air with all my chest and neck muscles, straining hard to breathe, and that's hard to live with. But I still celebrate life and can’t give up. My strength comes from God. God has given me a gift--the gift of life--and it's amazing that I have survived this long.

Tomorrow is Valentine’s Day and I am flying to Dallas for the American Academy of Forensic Science annual conference. I try to go every year and thoroughly enjoy the meetings and all the sessions of the varied forensic disciplines. Mostly, I stick with the Pathology/Biology sessions as that’s where they talk about dead stuff. While there, one of my bosses’ from work is bunking in with me. We bunked together in Atlanta and now again in Dallas. Libby is very quiet and mouse like, trying not to make too much noise when she comes in late. I, on the other hand, could talk all night with her about life and death...and cats. 2 of my bosses’ are presenting numerous pathology cases and papers to the attendees and that is really cool. Plus, I’ll meet the parents of my friend Wade Hello. Wade died from CF complications in October 2003 and Dallas is as close to Austin Texas as I’ll get to meet up with Jack and Darlene Hello. Plus my internet friend Paula and her son Micah (he has CF) will meet up with me too. It is quite something when you can travel into other cities where you have internet buddies with CF and have a little get-together. Of course, the Cystic Fibrosis Foundation vehemently opposes any notion of meeting others with CF due to their cross-contamination issues, but sometimes, life involves chances, and you can’t just walk away from your CF friends due to being paranoid about their “bugs”. I could never give up my relationships with any of my cystic friends over the very small, perceived fear that I might catch their “bugs” and die sooner. Live life---responsibly. Take sensible precautions, like hand washing, not coughing up buckets of sputum within 3 feet of other cystics, and no sharing your nebulizer equipment. You learn from each other and these friendships survive long after your cystic friends (eventually) die.

OK...back to the pulmonary doc in 4 weeks. I booked my next visit with Dr. Randy “the Rat” Garnett, my boy genius doctor who can laugh with me when needed, and beat me with a wet noodle when he has to, to impart some sense into me. He really is a character. OK.....off to Dallas tomorrow. Valentine Hugs from Lori. 

February 23, 2004

Back from Dallas where I had a wonderful time. I met with Paula and Steven Baker whose 15 year old son Micah has CF, and we had a nice dinner high atop the Adam Marks hotel. I have known Paula as a cyber-friend for many years from a CF on-line support group. The second day in Dallas, I won a Game Boy prize pak in a fund raising raffle. The forensic meetings went well and I attended a full day workshop called “Grisly Business: Serial Murderers and their Crime Scenes” as well as lectures on “Death Dealing Caregivers--Medical Staff Who Kill” and also “Swimming Pool Electrocutions”, as we now have an in-ground pool I thought it would be good to learn about those pool related fatalities. Well, I don’t think I’ll ever go swimming in another pool after that lecture! I also bumped in to all the faculty from my grad school and it was especially nice to hug Dean Thomas Johnson. I have a special fondness of being his grad student for 2 years while in New Haven and when CF ran amuck with my studies, it was Dean Thomas Johnson who called my parents (in Canada) to update them about my ICU admissions and to tell them I’d be OK, and that I could still be on course to graduate. Thanks Tom!

Of course, I did ALL my treatments to keep my CF in check and on those days I wiped myself out of all energy, I slipped back to my room for a nebulizer treatment and a nap. I infused all my IV antibiotics compliantly, did my nebulizer meds and treatments, and wore my 02 faithfully. The payoff is that I had a week of uneventful pulmonary problems and got along without scaring Brian even once. Weeks like that are so very rare and just fine by me. Bring ‘em on! In other good news, Lisa, the Lung Transplant coordinator at UNC-Chapel Hill (North Carolina), called to give me an appt. to go discuss their transplant program and transferring to it. Amen Lord! That’s 2 out of 2 positive responses (both UNC and Duke have said they are interested in me). Brian and I will be at UNC March 19th all day to do the rounds of meet ‘n greet the transplant team and then wait for them to decide what the next step is for us. This is more than just a fluke, it is the Lord’s hand at work in my (our) life. Think back to December 10th when I was turfed from Norfolk General, and how I was upset and angry. I had to leave that anger with the Lord and let Him control my life, and now 2 months later, both Duke and UNC are opening the door to possibly transplant me. Amen Jesus for not giving up on me. If this is the next step we have to take, it means eventually I’ll have to move out of state and leave Brian behind in Virginia, but I think it is doable. I think I can (sadly) kiss him goodbye and do this, knowing that whatever happens, everything is in Gods hands. The blessings never seem to stop, eh?

I had a wonderful time meeting with Jack and Darlene Hello while in Dallas. They are the parents of Wade, my friend with CF who died in October. They drove to Dallas (a 3 hour drive to meet me) and we went to dinner Friday night to a wonderful Texas steak house and it was so good. They all thought it strange that I asked for white vinegar for my fries, but hey, it’s a Canadian thing, eh. After dinner, we talked for another couple of hours about Wade, life and transplant and I hope they get to go on their dream vacation to Alaska later this year, in Wades honor. The next morning, Jack and Darlene were at my hotel at 0900 to drive me to the airport. Such thoughtfulness meant I could skip the airport shuttle and enjoy more time to talk with them. We hugged, promised to keep in touch, and thanked God for the gift of CF which brought us together. I invited them to come to Virginia anytime and promised we’d treat them well. Please come!

So that is life for Lori, presently. I am feeling well, doing well, and at times such as this, I wonder whether I ought to be transplanted. I mean, transplant can be the slippery slope to a premature death, and maybe I’ve got more in me to fight with before I concede new lungs are my last and only option. I can see Darlene Hello slapping me upside the head now and trying to knock some sense into me, and right behind her is Donna Price, followed by Shannon Parker and then Dr. Randy Garnett....Life is good. God is so good.

Mark 11:22

So Jesus answered and said to them, “Have faith in God.”

 February 26, 2004

Quick entry: Today I was a guest speaker at the Eastern Virginia Medical School to talk to the medical students about living with CF. My boss, Dr. Wendy Gunther, asked me to speak this year and I had a wonderful time. Last year, I was booked to speak but I was in the hospital due to CF (how ironic...missing a CF talk because I was sick with a CF infection) so I called my friend Stephen Neller and asked him to fill in for me. Stephen wowed their socks off! He even lifted up his shirt to proudly show off his huge scar from his double lung transplant. They wanted a close up view so some students came to him after his talk to ask questions and examine his ‘clam shell’ scar. Sadly, Stephen died in July 2003. However, I did mention Stephen in my talk today and told the students that when I get my new lungs, don’t expect me to lift up my shirt to show off my new scar. Ain’t happening. Thanks Wendy for the invite. Thanks Stephen for your presence.

March 10, 2004

Life has been busy at the new Morris-Hughes household, as we recover from our move and get things settled and arranged. Our 7 cats have adapted nicely and seem to be amazed at all the hidden places they encounter. We went from a 1650 square foot house to a 5000 square foot villa and there are lots of places for them to hide.

I am struggling with another routine pulmonary exacerbation and I suspect that it’s my regular Burkholderia cepacia and Pseudomonal friends delighting in the fact that all antibiotics stopped a week ago and they are now rearing their ugly flagella while delighting in my diminished resistance to fight them off. To that end, Brian suggested I call one of my doctors to let them know I am sick. I do not have that luxury as I am no longer followed by the Transplant Clinic and my present doc is frustrated with the repeated chronicity of my CF admissions for “acute on chronic respiratory failure” and probably wishes I would go away. I hope I am wrong in my assessment of him. These next few days will either result in a downward spiral or I’ll get better. I’m praying for the feeling better option.

Road trip March 18&19 to UNC-Chapel Hill (NC) to meet with their Lung Transplant Team. My husband Brian, my boss and support person Donna Price, and I will do the trip. I’m ready for this. God has done so much these past few years to show me He is in control that the blessings never seem to end. Amen. OK...more later. Hopefully I’m home and not admitted.....

March 12-20, 2004

I’m home. Basically, a short, confusing hospital admission. Why? Control issues. Some not-so-bright genius thought aloud that the reason my chest is so gurgly is because I am pouring way too much saline down my trach, and maybe even intentionally, he mused. Yeah, right. Wake up people! I have a trach to breathe, which bypasses normal humidification. Saline helps mobilize my THICK CF secretions. Not-so-bright genius then says to the nursing staff...”Please don’t allow Lori to have access to saline. Only under supervision can she use it. Oh...and don’t let her touch her own Medi-port lines because I don’t want her to mess with them”. Who do they think HAS been taking care of my IV lines these past 22 years? Who has been rendering care to my trach to keep it infection free? Who gets up at 0345 to suction me when I can’t cough the stuff out? Who has been doing g-tube site dressing changes every day to keep the site clean and clear? Now they are concerned I am harming myself? If I were ever insane so as to try and rationalize suicide for myself alone, all I need to do is very simply remove the trach from my neck and in a few minutes, I’m dead. No need to fool around with other less lethal attempts to get attention (like putting saline down my trach), contaminating my lines (resulting in sepsis), or other bizarre things. I am not now, nor have ever been suicidal. My love of life is so fulfilling that I’m trying to hang on for my dear existence here. My job is to be the wife God wants for me to be for Brian.

I am not going off on a tangent here folks, being cruel and ungrateful for the medical care I received. Once again, I survived another episode of respiratory failure and did not end up with a toe tag, but this admission just did NOT click for me at all. Too many hands in the pot and no one person to call the shots and provide continuity of care. Communication was nonexistent and there was absent the familiar collegial rapport I have had with my doctors. It has to get better. These are the people I look to to help me live independently at home, infusing antibiotics, hoping to enjoy another day of life. Another day to breathe and find the joy in little things. I had come to trust these medical partners to "Primum non nocere" which in Latin, translated means “First, do no harm”.

My appointment at UNC has been rescheduled for April 2nd. We are thankful they are able to see me so soon. It will be a day long adventure. We will drive down the night before. I am so ready for this now. I have watched as my CF friends have taken on new lives post lung transplant and even though every day is a new challenge, it is not fraught with the single pathetic dread of ...how will I get through this day breathing? When that no longer is the sole focus of your existence, I am certain your world literally seems to open up with new possibilities. I still have a small, healthy dose of denial spurring me on to fight. I am not so buried into denial that I am blind to my situation. When you can’t breathe, your life is for that second, for that next breath, for that next gulp of air. I do still have good breathing days, although fewer now.

While in the hospital this time, friends from our church came to visit. As all my family is in Canada, the visitors I have are of course, non-relatives, and in the ICU, they have sometimes turned away these friends who have come to see me. We understand, and we have never abused the visitors privilege. It all depends on who is volunteering in the ICU waiting lounge that day as to whether you are allowed in or not. I had visits from Rod Fombell, Gregory Nix and Pastor Moseley. The leader of my Ladies Sunday School class, Mrs. Jean Bible, is a real prayer warrior. She lifts me up to God in prayer and asks for all His glory and blessings for that day. Amen for Christian friends.

My pal Shannon is going on a Carnival Cruise next week to the Caribbean for her birthday/anniversary. She is so looking forward to the quiet down time with her husband and after her challenging transplant recovery, she is so deserving of being pampered. So.....Brian and I arranged with the cruise line to decorate her cabin as well as giving a credit to her shipboard account to use for an excursion, a day at the spa, a romantic dinner for 2, or just for taking the pinch out of the final bill when it arrives. We love you, Shannon!

April 1, 2004

Today I had a chest x-ray, a DEXA Bone Density Scan (T score was normal), a follow-up appointment with a new Infectious Disease doc who treated me as an inpatient recently, Dr. Neughebauer, as well as my regular fireside chat with my pulmonologist Dr. AJ Quaranta (I call him “AJQ”). The consults went well and I am going to finish all my antibiotics on April 6th. I’ll also decrease my Prednisone from 20 mg to 15 mg per day starting Saturday. I am at my baseline for my CF and even then, I am short of breath. I don’t have to go back to see AJQ for 4-6 weeks, as long as I am doing OK. Cool Beans! We head down to UNC-Chapel Hill tonight to meet with the Lung Transplant Team tomorrow.

Hebrews 11:1

Now faith is the substance of things hoped for,

 the evidence of things not seen.

April 2, 2004  University of North Carolina-Chapel Hill               

Brian, Donna Price and I finally arrived at the Homestead Suites hotel in Durham last night after a few detours. UNC was just 11 miles away. We checked in for my 9 AM appointment with the Transplant Psychologists who were quite nice. They asked a lot of open ended questions about depression and anxiety. They asked about any suicidal ideation’s (none to report) and coping mechanisms (I pray). It’s been surmised that the stress of waiting for a transplant, then the elation of getting “The Call”, coupled with the post-op steroids and meds, sometimes makes you bonkers. The whole gamut of emotions can get the best of you and I’ve heard post transplant depression is common. Then I met with the Social Worker who went over logistics, suggested resources for housing, and explained what my commitment involves if UNC accepts me. We also talked about my Durable Power of Attorney for Health Care Decisions, who would my support people be post transplant when I am living in the area for 4-5 months after discharge and not able to be at home with Brian in Chesapeake. Their transplant support group meetings are a must and despite having Burkholderia cepacia, you are expected to attend and use sensible germ precautions. Then I met with the financial counselor to go over my insurance benefits, how to fund a transplant and money issues. Next, I had a 10 minute break until I met with one of the transplant surgeons, Dr. Thomas Egan. This guy is a hoot. He has an elfish grin and just takes it all in, smiles, then lays it all on the line. No holes barred and very blunt. That’s the way it ought to be. The fact that he is Canadian and graduated from my alma matter, the University of Toronto, made it that much sweeter. He was from my home turf. With Dr. Egan were 2 pulmonologists who asked lots of questions and made suggestions. Their suggestions included the fact that the Prednisone dose has to be decreased, that I ought to be nebulizing Pulmicort directly through my trach to help with inflammation, that hypertonic saline is a must to help mobilize my sputum, that my next CF exacerbation would better be treated with a quadruple cocktail of IV antibiotics, that I should be seen at the UNC CF clinic for their expertise, and--no shocker here--I have to lose weight.

They will discuss my eligibility at their weekly Transplant Case Conference and then let me know what happens next. Interestingly, Blue Cross has certified UNC as being a center for transplant excellence for CF patients. Well, I lucked in then, didn’t I? Or more appropriately, God has opened that door for the moment. Special thanks to our major support person, Donna Price, who came along for the journey and sat in on the talks with Brian and I. Donna likes the Homestead Suites, plus they have free breakfasts and dinners for all guests, and free HBO too. More later....

April 4, 2004

We have lost Chloe. She is our precious Maine coon cat who unfortunately, got outside while we were sleeping and has not come home...yet. Last night, Chloe and Buddy ran into the garage to play with Taylor-Girl so we left them to play. A fierce wind blew open the side garage door and all 3 cats escaped. Brian woke up at 9 AM and went to feed the gang of 6 when he found the outside garage door flung open. Within 10 feet of the door, were 2 of the 3 furlines, Taylor-Girl and Buddy, but no Chloe. We have searched for 10 hours and no Chloe. She does have an ID tag on her collar so we are praying she is well for now and being taken care of until someone calls us to come get her. We drove up and down the street to see if she was splattered on the road--nope. Lord, please send Chloe home. 

Easter Weekend

This Easter holiday Friday reminds us of the sacrifice Jesus made for the sins of the world, mine included. Not only is today Good Friday, but it is also "Good News for Lori" Day.

At 9:30 AM the phone rang and it was the transplant administrator from the University of North Carolina @ Chapel Hill (UNC) telling me I was accepted into their Lung Transplant program. The Lung Transplant team met on Thursday to discuss my case and decided to offer me the chance at transplant, with the hope that down the road, donor lungs will become available. Amen Jesus. Amen for all your continued prayers.

Now this is not new to me: I have been in this very position before, on April 6th, 2002, when Norfolk General told me they had accepted me into their transplant program, and the long wait began.  However, (only with hindsight can I now say this) the wisdom of Dr. Randy Garnett and Dr. AJ Quaranta at Norfolk General mandated that I would be better served to look to both Duke & UNC for transplant as my CF and trach issues are more complicated than they could handle. It took guts to turf me from their program, but then that closed door led to an open window at UNC. Only now, can I see and appreciate the awesome hand of God in all this. Nothing I did made this happen, other than to want to live and be around for years down the road, if just to torment Dr. Randy “the Rat” Garnett.

My blood type is B+. Only 9% of the population have B+ blood type. Most people belong to either type O+ or A+. The good news is I am not competing with them for the scarce donor lungs, so my wait might not be that long. Still, I have to continue to lose weight, or there won't be any “Lungs for Lori”.

Next Thursday, the UNC transplant team will decide whether I can stay at home in Chesapeake until they have a donor, and fly down on a chartered jet, or if I should move to Durham and wait there. The wait could be 1 week, it could be 6 months. No telling, exactly.

The drive is 4 hours from my door to UNC, and the jet is 52 minutes. I'd prefer to stay home here with Brian and jet down when they call. It could also be a “dry run”, meaning the lungs are no good for transplant, so then we come right back home again. If it is a go, then Brian will have to camp out in the ICU waiting room for a day or 2 then find a hotel, until more permanent accommodations are worked out. The post op stay is 4 months minimum, and even longer. We are prepared for that, with rotating friends who will give up some of their time to be my 24/7 live in caretakers in Durham.

All this is in the planning process, and will change down the road. But this is the gist of what might happen, just to let you know. As your prayers have worked thus far, keep them coming. We need all the encouragement you can give and remember too, that a family has to have someone they love die, so that I can live. This is what makes the miracle of transplant possible.

So on this Good Friday, indeed, I am blessed with Good News.

PS: Still no Chloe

Round Up in Review

I’ve been too busy to write for a while, so here is my attempt to catch up. UNC called to say I can stay home in Chesapeake until I get higher up on the transplant list, then I’ll need to make a decision. By staying home, I won’t have to rent an apartment in Durham, but at the possible trade off of missing a call for backup lungs. It was explained to me that sometimes you are called as the backup for the primary candidate, but should they not be in the position to accept the lungs, the fact that I’m 4 hours away in Virginia means I would not be called and would have missed that opportunity. It has happened before at UNC, so they have asked me to consider the risk vs. the benefit aspect ratio and decide. I do not have a 24/7 caregiver pre-transplant, so it would be an exceptional case for UNC to OK moving to Durham without that person. I’m going to stay put at home in Chesapeake for the time being. As transplant is not a sure thing, I treasure this time with Brian and friends. It would be difficult to go out of state and leave him here.

I was told that nothing will happen for at least 6 months, so enjoy my summer, relax and don’t worry. When I need to worry, UNC will tell me to worry. Even better, is that I am collecting time while I wait. I already had 357 days locked away in the UNOS Bank from Norfolk General, which was transferred with me to UNC. The waiting list at many transplant centers is upwards of 2+ years, so the thing to do is list early, bank the time, and use it when you are on your last leg, but not with one foot in the grave with the other on a banana peel. That’s too late. Lungs are the only solid organ(s) transplanted which are distributed solely based on the time you have in the bank. All other solid organs are allocated based on severity, as in the sickest one gets it. Not lungs. You have to be well enough to survive the surgery, but sick enough to need it, with a prognosis of less than 2 years to live without a transplant.

Still missing Chloe. She has not come home yet, despite a large reward for her return. Our trap has only caught 2 possums, and boy, are they ever ugly looking things.

Brian celebrated his 40th birthday April 19th and we had a party here for him. The weather was wonderful. He gave tours of his new broadcast studio, WBDH Radio, and wowed them all! April 18th, was our 6th wedding anniversary. Six years married to the joy of my life. Brian has made these last six years a very happy time for me. We pray for more years together. I am so proud of him and in awe of his encyclopedic knowledge of engineering, wiring and electrical circuits, especially the way he prewired his new studio. Oh yeah...and did you know that I love him too?

I am doing well from a pulmonary standpoint and not on any IV antibiotics now. I’m using The Vest three times a day for 30 minutes and sucking in lots of neb treatments, but the payoff is I played hostess for Brian’s birthday celebration and held up for 8 hours. I am doing pathetic exercise workouts at a local “muscle gym” and still, I have yet to see any toned muscles on my body. However... I am able to walk longer times on the treadmill (notice my careful use of the word walk here, as I won’t attempt to jog or run) and I can maintain my O2 sats on oxygen and try to push a little harder some days.

I went to work last week for a whole day, but it was primarily a social visit as I didn’t do any official state business. Some days, you just have to get out of the house and enjoy a change, plus the bunch of great people at my office make it a day to look forward to. When you wake up, (then cough out a lung) and can’t wait to get to work, you really love your job. Post transplant, I hope to return to work doing the job I love, as a death investigator. I’m going to visit my friend Krista at her new home today and then we’ll go out for dinner.  (“Try Don Pablos”, SquEEkS rAnDY The  rAT).

 May 4, 2004

I received my “Official” you’re listed for transplant and “Congratulations” letter from UNC last week. It made me smile and praise God for His goodness to me. Look back to my journal entry of December 10, 2003 when I was turfed from the Norfolk General lung transplant program and the despair was very evident in my post. I’ve come full circle and the wonderful thing about this is that it’s all the will of God working in my life. I asked God for whatever His will is for my life, to happen, good or bad. If UNC were to say “No transplant”, then that was my answer. We don’t always get the answer to prayer WE want, and sometimes, we feel we never got any answer at all. But God’s timing is perfect, and I believe that if His will for me is to receive new lungs, a donor will match and it will happen. It’s not a sure thing at all. 3 out of 4 people waiting for new lungs, die waiting. I may be one of those, or I might be the 1 in 4 who gets it, but I am not hung up about it, depressed or anxious. You see, if it’s God’s will, it will happen. If not, then I have to accept that as well, and for me, it’s a win-win situation. Any way you rationalize or philosophize it out, as a sinner who accepted Jesus into my heart when I was 11, as a child of God, I’ll spend eternity in Heaven, without coughing and without having the diseased lungs of CF.

I had a wonderful weekend visit from Diana and Bunky Mason of Kingston, MA this weekend. They are the parents of one of my best friends who had a double lung transplant for CF at Mass General Hospital (Boston) but who died post op. Jeff never got to leave the hospital. His father had to make the decision to “pull the plug” when Jeff was clinically brain dead. Jeff and I met many years ago on the online CF internet web called Cystic-L and eventually met when I went to grad school in Rats Haven, CT. Jeff has a brother who also has CF. He is 28, married and doing well. His parents have survived, I believe, because their Christian faith has brought them through this. So we had a nice visit and caught up on life. We shared photo albums of weddings and of their Team Mason annual CF Great Strides walk for CF fundraising. It was wonderful to have them as guests here in our house and the door is always open.

Diana has even volunteered to come to Durham/Chapel Hill when I get my new lungs, to help as one of my 24/7 live in caregivers for 2 weeks. This is an answer to prayer as I have to line up friends who will commit to stay a week with me while I recover. I need to arrange to be covered with live in helpers for the whole time spent down there until I am well enough to be discharged home to Virginia. My list of volunteers is growing. Examples include a married couple from my church who have volunteered for a week and my nephew Timothy in Toronto has signed up for 2 weeks along with his wife (who is a nurse). My friend Krista who is a Respiratory Therapist and who always looks after me when I am admitted for a CF tune up, has also volunteered, and another RT friend also signed up for weekend duty. Again, the Lord is looking after this need and friends are calling or emailing to get on my “Lungs for Lori” support list. My list is still open and taking volunteers.

About me: I’m not doing that great and soon will need a tune up. My sputum is rancid, vile and stinks, so I need a suitable antibiotic cocktail. I know this is my Burkholderia cepacia working overtime due to the very nasty smell of my sputum and my shortness of breath. I went to the micro lab last week and gave sputum which is still cooking. When they know which bugs it is growing, I want to begin treatment as I am symptomatic and won’t get better by ignoring it (I’ve tried that before--it doesn’t work!). Hoping I can get Dr. AJQ to agree.

Still no Chloe.                                                                                                                                  It’s been 1 month since she went missing. We miss her terribly. I went to the Pound yesterday and they said in our neighborhood, a fox has ran off with 3 other pets recently, so as we have not found her squashed dead on the road or dead in a ditch, maybe a “fox done got her”.

May 10, 2004

I’ve not had a dramatic change in my ability to breathe better these past few days so I know what my next step should be: hospital tune up time. Despite increasing my Prednisone to 40 mg per day (from 15), it hasn’t packed any punch at all to make me more comfortable staying at home and toughing this out. Dr. Randy Garnett said I have grown out my regular compliment of friends, namely cepacia and Methicillin Sensitive Staphylococcus Aureus, and with sensitivities to Cipro and Zosyn, those 2 antibiotics should do their job--alas they are not. I’ll have to deal with it today, and touch base with my pulmonary docs. Here goes another adventure...

James 1:6

But let him ask in faith, with no doubting, for he who doubts is like a wave of the sea driven and tossed by the wind.

May 21, 2004

Home. I feel so much more comfortable when I am back at home, in my own bed, surrounded by a furball or two, and tucked into my comfortable surroundings. My home care nurse is Melissa. She has taken over my nursing care for the last 2 years and makes sure she alone does my house calls and check ups. Sometimes, it falls to the night nurse, and so Melissa can’t come, but that is unusual and as she prefers to protect me, Melissa always advocates when I am not feeling well. Case in point: She paged Dr. Randy Garnett and said I was not looking too pink, and wanted to bring me to the ER. She drove, I coughed. I hung around the ER for 12 hours, until a bed in the ICU was available. Sometimes the bed shortage situation is so severe, the RTs have 2,4, or more ventilator patients hooked up in the ER just waiting for a bed in the ICU. And this is in the US--not Canada. Well, I was in. At least my foot was in the door. I was deemed to be a full code, so I sped through the system of “Let’s Find a Bed” and retreated to the ICU. A familiar place of comfort. Why? Because they have saved my life a few times already, so I have come to expect that quality and caliber of medicine. I also know that one day, the last of my Morris 9 lives will end, and there will no more be a fortunate, “I got here just in time...by the skin of my teeth” Lori. By then, I’m dead.

As I said all along, I was confident my nasty lung bugs were the Burkholderia cepacia variety, which seem to always delight in the dark, moist recesses of my necrotic lung tissue. One gets proficient enough in living with CF to know which bugs are causing problems. Anyhow, my friend cepacia and I fought it out and at least today, I am home and updating this web page, rather than being gorked out longer due to Respiratory Failure. Eventually, one day, that will be the cause of my death, if CF runs its course: Respiratory Failure or Multi System Organ Failure. Couldn’t be something as succinct as “just CF”. Nope. Has to be a more, long drawn out ICD-10 code to explain 40 years of disordered breathing. In the end, an autopsy will be done and they will gather around to pronounce “.... she died from the complications of cystic fibrosis.” As if that would be shocking news. But it is nice and can be packaged for all to handle ever so gently. But I am a Rebel. I have to go out fighting, so everyone will know I fought to the end. No pansy escapism for me.

I am infusing IV antibiotics for another 2 weeks to keep me well. My niece from Toronto arrives in a week for a summer visit, and I really look forward to her company. My best pal, Shannon, is back at Duke dealing with new lung transplant concerns. She said she has had 2 amazing years, so she can’t complain now that she is not feeling that well. She knew it would hit her sometime. We think this is a temporary set back and know she will recover when the Duke docs treat her for this new infection. It is not life threatening, but still not a nice thing to deal with when you are the prime of your life and living your second life with new lungs. Shannon is such a blessing to Brian and I. I get much strength from her courage. Her 2 little boys only know the love of a Christian family who dote on them everyday, knowing that just 2 years ago, she was almost dead, where it not for a family who donated life when their young daughter was killed. Amen for families who can say YES to organ donation in their grief.

OK....nap time for me now. I have meds to infuse and have to jump on a Vest treatment, to knock the crap right outta my lungs. I am so thankful for our housekeeper who keeps the house clean when I am in the hospital or at home sick. I am very blessed to have special people who love me. Amen!

May 25, 2004

Our little precious furry creature, Randy the Rat, died today. Gathered around his cage during his demise were his feline “friends”, Simon, Taylor, Puddy, Buddy, Tucker & Jackson. It should be noted that I used full restraint to keep Jackson from pouncing on the still warm carcass of our beloved family Rat. Rigor had not yet set in. The Medical Examiner declined to take the case, citing lack of evidence that either a homicide or suicide had occurred.

Burial will take place at sundown tonight in the Morris-Hughes flowerpot. Scavengers and maggots are expected to be in full attendance. Carpe Flea-um!

June 2, 2004

It’s been 2 weeks since I last wrote and in these last few days, I have really done well. I am puttering around the house doing chores, pool duties (scooping dead mice and frogs from the pool), and just lounging around enjoying the sunny days. As I have felt well lately, I think to myself that perhaps I am well enough to return to work, doing light duties. Then Randy “the Rat” Garnett pops into my head and bursts that bubble. Ain’t happening without his approval. It has just approached 1 year since I “retired” from my job to devote more time to my health. I think at the time, “retiring” was the only decision to be made to keep me alive for transplant. Good call, Randy.

Yesterday, we had a Memorial Day BBQ & Pool Party here which was fun. Shannon, now home from Duke, brought her 2 little boys over and they had a great time. Brian made a fuss about my blue lips (cyanosis) and ordered me to bed with oxygen, for a nap to reenergize me. It lasted 20 minutes, as the squeals of delight from the pool were too irresistible to pass up and lay in bed missing all the fun.

The contractors who are working on our house, CUT through our sewer line on Friday. We had to call a plumber stat to come fix the leak. Then on Saturday, they CUT through our gas main! Brian called the gas company stat and they capped off the line and fixed the break. Today, they CUT through the septic tank line. I should have fired them! Even though we had to have the city come out and mark the property so they would avoid cutting through any lines, they missed some. No kidding, eh? I told the electrical foreman that the 3 bills for the service calls were going to be paid by THEM, and I wasn’t going to fork out the $$ for their 3 mistakes. So my stress level today was off the scale, but then I came home to Brian who hugged me and made all my lousy blues fade away.

I am reworking my web site...slowly. It might take some time to tweak it, so hopefully I’ll come up with a new site soon. We’ll see. I see Dr. AJQ this Friday for his words of wisdom and perhaps I can negotiate stopping the IV meds as I am feeling much better. He’s not one for negotiating much, but I remain hopeful. More news later, Lori xoxo 

June 5, 2004

I saw Dr. AJQ today for a follow up appointment and the meeting went well. He agreed with UNC to start me on nebulized Pulmicort via my trach. The UNC CF docs pondered my case and said they would suggest nebulized Pulmicort which should help to decrease my oral Prednisone dose. AJQ agreed. We held off on instituting their (UNC) suggestion of nebulizing hypertonic saline down my trach as I really don’t want to be coughing up a lung and feeling my throat irritated from the dose they recommended. Hypertonic saline is 3% saline, where my regular mixture is 0.9% saline, so a jump up means more tracheal irritation, which I don’t particularly want right now. Will discuss it with UNC when I return.

Something I don’t understand is why I have major pain issues. My chest and rib cage/muscles hurt all the time. In the morning when I wake up, I spend half an hour coughing out a lung with great force, and I hurt so badly, I take 2 Percocet tablets, go back to bed, and pray for the chest pain to “go away”. It usually takes 1 hour and 20 minutes until I can get going and start my day. By 2 pm, mid afternoon, I am throbbing again, and I have to take 2 more Percocet tablets and then nap, hoping the pain goes away. This repeats itself again at about 8 PM and... I don’t like it at all. Why am I having this pain? It’s nothing that new, actually. I’ve been having chest pain for about 3 years now. First off, it was handled with Tylenol #3, then we bumped it to Tylenol #4, now Percocet seems to hold it most days, but even then, in between doses, the pain is severe. Do others with CF experience this as well? I’ll have to ask. I want to understand it better so I won’t be labeled a “junkie” when I ask for refills on the Percocet. I cough and cough and cough and then ache and ache and ache, and no wonder I need pain meds. I know that IV Morphine does absolutely nothing for my pain at the meager doses they give me. Nothing! 2 mg is their usual dose, 4 mg if I am in tears and begging. 5 mg if I threaten to go home AMA and get my own supply of pain pills. Morphine does NOTHING for me. Sure, hit me up with 20 mg and I’ll stop breathing and drop dead, just like everyone else. Does it ever end? When does the pain cease to control my life? Hopefully new lungs will bring an end to this chest pain. I have even slid into the hot tub to try and therapeutically ease the tension and pain in my chest, but that does little to make me comfortable. It seems only narcotic drugs take the pain away. This is not something I am pleased about. I feel stigmatized by needing this pain med. Any suggestions?

I had lost 10 pounds before this last hospital admission, then with the chaos of ICU and being vented again, I GAINED 15 pounds back! A lot of it was retained fluid which was third spaced, so the solution was Lasix, to pee off the excess volume. Works great, but when I take it, I pee every 20 minutes for the next 3 hours straight, then my day can begin. It has helped knock off 5 pounds of fluid in 2 days. Prednisone dose is still holding at 15 mg daily.

Best news?? Dr. AJQ agreed with me to stop the antibiotics. YEAH! So tonight I’ll heparinize my Medi-port lines and de-access them. I am done with them for now. That is wonderful news and it lifts my spirits. I am ready to enjoy long showers and hot tub soaks now that my central lines are pulled. I also told AJQ I have had the best week in a very long time, and have been doing well and breathing without much difficulty. Not quite normally, like y’all, but better for me at least, compared to my baseline. I also have been sleeping dreadful amounts of time, just sleeping away, and wonder “why now?” Why am I sleeping 18 hours a day for the past few days? (Maybe I am recovering from the visit with my niece Stephanie, who was a joy and delight to have at our home).

OK...trying to keep things on an even keel and trying to stay well. No news from UNC other than to stay in touch and continue to lose weight for transplant. Everything is good, amen!

Luke 17:5

And the apostles said to the Lord, “Increase our faith.”

June 10, 2004

Today I am having “issues” with my Medi-port. Yesterday I had a fever of 101.8 and one episode of minor chills. The chills always signal a concern that I ought to take it seriously and find out what’s going on. To that end, I called my surgeon, Dr. Lara Dimick and explained the area directly over my Medi-port is very tender. I can feel some fluid around the Medi-port pocket but the worrisome concern for me is that about 2.5 inches of catheter length, running from my jaw to my chest on the right side, is pin point tender and red. So today I’ll go down to her office and hope she can fix it right there in her office from her black bag of magical goodies and potions. More likely, I’ll have a PICC line inserted, infuse IV Vancomycin for 4-6 weeks in an attempt to “save” my Medi-port, and see what happens.

The evening home care nurse (a substitute) stuck me 8 times with a needle to try and get blood cultures from the offending Medi-port, but nothing. Brian had me squeeze his hand so I would not flinch, cuss or spit venom and have the needle miss its intended mark...my chest. I am hopeful we can save this Medi-port. Will update later when I know more. Lori Hugs

June 11-15, 2004

My Medi-port is gone. It could not be saved despite noble attempts. A few days ago, the neck swelling was progressing beyond the pen-marked boundaries Dr. Dimick land marked on my neck as a map so I would know when I was in trouble. My home care nurse made a few phone calls and I was soon on my way to Norfolk General to be seen by, get this....Randy “the Rat” Garnett in the ER. Now that was cool to have him come and admit me and add his 2 cents worth. Shannon’s sister (Lori) was with me in the exam room and it was kind of funky as she is post double lung transplant and I am pre double lung transplant with some resistant bugs in my sputum (like cepacia) and here we spent all week hanging around together at my house and who would be the one most annoyed by this? Randy. Still, I really appreciated that he showed some humor and made me smile through the pain.

The current thinking in all American CF centers is that those with resistant lung bugs, like mine, are to be treated as social lepers and strictly forbidden from attending any functions sponsored by the CF Foundation. In fact, they clearly say in their invitations...”People with Burkholderia cepacia and other multiply resistant organisms...are not allowed to attend so and so events.....” I resent the loneliness CF can impose with rules such as these. Afraid to go and sit in a friend’s car and just chat, afraid to go to baby showers and engagement parties all because of the fear my germs might cause another CF person, afraid to hug another with CF, not wanting to be the source of their next infection. I have allowed their rules to have power, to change everything for me. I always hear the same diatribe over and over again, how we are cross infecting and killing each other, how so and so will lose their new lungs because I went to a birthday party for their second cousin and they then went home and passed my bugs to their CF cousin, or something lame like that. Give me a break. We have to live with CF, not die by it. My CF friends mean more to me than some other things in my life, and so we have a pact, a pact to throw their rules into the trash can and continue to live a meaningful life with friends who have the same struggles as I do, who know what’s it like to cough up blood, to know the anxiety of not being able to catch your breath, who know what you are experiencing has happened to them too. Our friendships are too important to let CF dictate who we can socialize with and who we can share our struggles and blessings with. OK...next topic....

The Medi-port was accessed and IV antibiotics of Vancomycin and Meropenem were begun. Blood cultures drawn. We watched and waited. Saturday was very painful, but no worse than Friday. Sunday, the same. Monday, very painful, very worse. I had just earned a trip to the OR. Dr. Dimick took the Medi-port out and left the hole open and packed with gauze. Letting the infected port pocket heal from the inside out was the best option to clean up the pus. Slowly, the gaping 2 inch hole will close and get smaller, then seal off. It looks ugly! It is not drop dead painful, but I still take Percocet one hour before my home care nurse has to change the packing, which is every day until it closes. In the meanwhile, I have a PICC line for IV access and am infusing the same antibiotics until they say to stop. The Medi-port is being cultured to see which bugs were the bad ones this time and I am home, so much more comfortable in my own home, and feeling very grateful to God for not making this a nasty blood infection. Also, Brian and I are hosting an Open House on Saturday, so I needed to be home for that. I prayed I’d be able to make it and be healing from this infection. So far, seems as if I’m on course for that to happen, amen!

I’ll continue IV antibiotics at home, and in July, Dr. Dimick will schedule me for Day Surgery for another Medi-Port. I also asked her if she would change over my g-tube to a Mic-Key button and she said quite possibly she would. So in all, this was a short admission that went well. Now, let the Open House begin!

June 20, 2004

We had a wonderful Open House one day ago and it was a pleasure to have new neighbors come over and old friends return again. We had 64 people come visit our new home and way too much food to eat. The showpiece was both Brian’s WBDH Studio and our Home Theater, which seats 9 and has a popcorn and nacho machine, plus all kinds of other confections in the “lobby”. Way cool! The pool was the fullest it has ever been with 13 people at once in it and best of all we were able to fill our house with friends and laughter. My home care nurse Melissa came and brought her mom and son, and somewhere in between, slipped in my Medi-port dressing change and packed my wound. The first friends came at 12 noon and the last friend left at 9:30 PM, so it was a full day....and I am paying for it now.

I am dealing with a very sore throat and a bad cough. Temp last night was 100.9, so I took 2 Percocet tabs and tried to sleep. I was up coughing every half an hour and every chest muscle I have aches. Today is a stay at home and get better day. I am too sore to do a Vest treatment as I don’t want my chest shaken violently today...it’s too sore. Best news?? I saw Dr. Dimick on Friday for follow up of my Medi-port removal and she said my wound pocket was looking very nice, to keep changing it and packing it every day, and also I could stop the IV meds. The Medi-port cultures came back and the staph growing is sensitive to regular old oral Keflex pills, so I began those on Saturday and am finished with IV antibiotics for now. That was wonderful news to hear.

Nothing new to report from UNC. Just keep on loosing weight, enjoy my summer, and they will tell me when I have to make serious decisions about transplant issues. I am still working on redoing my web page, but it is taking me forever to learn Flash MX programming. Hang in there......

June 22, 2004

Just 2 days later and I am a wreck. Fevers randomly throughout the day, a real snotty nose which is the first one in TWO years for me, and a very, very sore trach. I cough and cough and cough until I am on the verge of throwing up or I pee my pants, one or the other. I have streaks of blood coming from my trach with the violent coughing, but it’s not alarming. I hate this. I am on oral Keflex but clearly, it’s not helping my pulmonary symptoms at all. Add the night sweats and I so totally drench my bed sheets with cold, wet sweat, then lay in it, hoping I’ll fall asleep and not be bothered with the damp linen. By then, I am too tired to fight with the soaked sheets and just want to go to sleep. But there is good news to report! My Medi-port wound is healing very nicely and perhaps it will be another 5-7 days until it is completely closed. The packing is no where near as painful as when they first began stuffing my chest 10 days ago, and now I only wince and manage to hold back the tears.

I’m going to bed now, it’s just 7 PM, but I am feverish, sore, and just want to sleep, so off to bed I go. Will watch this “cold” and hope it fades into nothingness and does not cause me any more grief. Really, I just need to be fever free and have my snotty nose stop running, then I’ll be presentable. 

June 24, 2004--almost midnight

I am not a super hero. My powers to fight the bad guy and win are not working this time. My nurse Melissa, comes every day to pack my “I don’t have a Port anymore” chest wound and she (and I) were concerned at my pulmonary decline since yesterday, so she paged Dr. AJQ. In less than 1 minute, he called right back. The best news is that he decided I did not have to troop down to the ER to be assessed, but that I could instead, begin more aggressive treatments at home. Sweet Dr. AJQ ordered oral Cipro, kept the oral Keflex going, and restarted my dear friend Meropenem, again. Blood & sputum cultures were submitted and very happily, my O2 sats were a wonderful 93%, so no need to rush to the ER. Besides, I was actually PINK, and not the more ominous blue/gray pallor signaling impending respiratory failure. Well, so why am I up writing this at midnight? I’m infusing my midnight dose of Meropenem. I have to be compliant and do what keeps me out of the hospital. Sometimes being in the hospital poses more of a danger than being out of the hospital. Icky germs and sick people are all around the place, and then they wonder why you picked up another nasty bug. Duh!! I’m the first one to decline when they want to admit me, as I try to wriggle my way out of an admission, unless of course, I know it’s the best solution for me, then I humbly submit to their will and agree.

My evening fevers have been taken care of with Tylenol & prayer, and I can report that is a victory. Hey...funny thing....my nurse Melissa came to my house after her previous patient and she said if I saw any roaches crawling out of her bag, to let her know. The last house she came from has more roaches than people and she was afraid a few might have hitched a ride with her. Eeekkkkkk....gotta love the South Norfolk ghetto.

I’m registered to attend the National Association of Medical Examiners annual conference in Nashville this September and in keeping with its theme, they have a “Rigor Run” and also a golf tournament called the “Cadaver Open”. Hey...Humor in the workplace. Two of my bosses’ are guest speakers, leaving one boss in Norfolk to hold down the morgue while we are all having fun in Nashville. Go Libby!! OK....Tomorrow is another stay at home and get well day, and hopefully I’ll be able to get to church this Sunday and not cough out a lung during the sermon. Praise the Lord for these small steps to victory and healing.

June 27, 2004

I’m doing better. No fever for 24 hours, Amen! I woke up at 5:45 AM to the alarm clock, rather than to my spasmodic fits of coughing, then I infused my morning dose of Meropenum and read the newspaper. Fed the cats, groomed Simon (my 30 pound cat), and went back to sleep for another hour. Got back up, did a Vest treatment, inhaled various nebs, and now feel ready to start my day, at 12 noon. My weekend nurse will come soon to pack my chest wound but it is almost closed, so not much longer doing that. Tomorrow, Brian and I go to Norfolk General for 7:30 AM to prepare for Day Surgery. Dr. Dimick will work with Dr. Gordon Stokes, a vascular surgeon, to place another Medi-port in my left chest for IV access, in the subclavian vein. It’s my last and final access point, save for a femoral port, which ain’t happening! Dr. Dimick has asked Dr. Randy “the Rat” Garnett to assess me in the morning to decide if, from a pulmonary point of view, I am OK to have the procedure. With my chest being so nasty all week, he will decide if I can tolerate the general anesthetic. The plan is for me to wake up and go home in the afternoon, however, with me, that is never the norm. As this journal has detailed before, Day Surgery for me can mean Week Surgery, as it has happened that way a few times now. Crappy lungs make for a crappy recovery. Gotta get me some new lungs! We have also planned to have the 18 inch long g-tube in my stomach changed over to a Mic-Key button, sorta like a flip top. That is more desirable for me as I very much hate the long tube hanging from my gut. Yes, it seems to leak more with a button, but I have a liquid skin type of barrier I’ll use around the site, and as long as it is at least a 3-4” length of button, it will work. Ohhhhhh I am excited! OK then, time to rejoice for small victories, no fever, and a precious day ahead of me today. More tomorrow evening, if I make it home from the so called Day Surgery.

June 28, 2004--Change in Plans

Sometimes the best plans go awry. Or my way of summing it up is that it was not on God’s schedule for me to have Day Surgery today. The brightest face to greet Brian and I this morning in the pre-op holding area was Dr. Randy “the Rat” Garnett. I retold my story of my vile humors of last week and he ordered blood work, sputum cultures and a chest x-ray, to rule out pneumonia. Then he dropped some surprising news: I (again) cultured MRSA in my sputum 3 days ago. Darn it! I so faithfully did 6 weeks of IV Vancomycin a few weeks back and then more recently, did 7 days of IV Vanco and Meropenum, but still the nasty bugs are bugging me. Perhaps that accounts for the fevers, chills and ugliness of these past 10 days. Hmmmmm...anyhow, the x-ray was fine and my white blood cell count was a normal 7.4, so, he said YES to go to the OR and signed off on me. I was then moved to the OR and the anaestheologist does not like my “breathing”, and fusses about it. I told him he is seeing me on a good day, so take it and run. In comes Dr. Dimick, who learns about the MRSA and hears my coughing, and consults with Dr. Stokes, who is seeing me for the first time ever and doesn’t know what “normal” is for me, but he is cautious (or scared) enough to agree that it is too risky to go further and so they hit me up with three hard IV cocktails through home care for I don’t know how long, then they will bring me back to the OR in a few weeks and try again. I agreed because I know I am not 100% me, but I didn’t think I was that bad. I know when I am BAD from a CF point of view, and this was not Bad...maybe just scary to the surgeons. So everything is canceled and I got to go home an hour later. Returned to my bed, had a nap, and felt grateful the Lord was in control. Ba-da-bing! OK...deal with this MRSA infection, hang IVs at home, feel better, breathe better so as not to scare the bejeebies outta the surgeons, and try this all again in 2 weeks. Gotcha! Thanks Dr. Randy Garnett for being there.

Name of Drug How Often Yukkiness Ciprofloxacin twice a day no complaints Meropenem three times a day drops my white count Vancomycin twice a day makes me itchy

BREAKING NEWS

The organization which oversees the allocation of transplanted organs (UNOS) has adopted a new method to decide who gets offers of new lungs, effective in mid 2005. Here are 2 important articles which detail this further. What this means for me, I don’t know (yet). After almost 2.5 years waiting, I hope I don’t get dropped even further back down the list, however....whatever God has in His plans for me, will happen in His good and perfect time.

 

New Lung Allocation Policy

 

UNOS Proposal regarding Allocation of Lungs

After reading that 31 page proposal, my question is...am I better off or worse off now???  When I know more, I’ll share it with y’all.

Norfolk General Closes

Lung Transplant Program

The Virginian Pilot, Pg 16, Wednesday July 7, 2004

Sentara Norfolk General Hospital suspended its lung transplant program, officials announced Tuesday.

Since the programs inception in 1992, 27 lung and four heart-lung transplants were performed. Only one lung transplant was performed in the last three years, due largely to the lack of availability of the organ.

Officials said the program wasn’t popular enough to continue. And because of the hospital’s low procedure numbers, it was having a hard time getting reimbursements from medicare.

Seven local patients on the lung transplant waiting list have been referred to other programs in the state.

Sentara Norfolk General will continue to offer post-transplant care to those who have had the lung transplant procedure there in the past.

The hospital still plans to operate its heart and kidney transplant programs and is seeking state approval to begin performing pancreas transplants.

The hospital has performed 1,375 kidney transplants since the program began in 1972. It has conducted 224 heart transplants since 1989, when the program began.

       Click here to read the press release from the Hospital

                    

I thought it might come to this, and it has. Sadly, they have had to close their lung transplant program. I am not sad for me, I’ve had to move on, but I am sad for Dr. Randy Garnett and Dr. AJ Quaranta who were the Co-Directors of the program. I am sad that their dream of helping their patients in this manner won’t happen on their own turf, close to home. I am sad they have had to give up something they were both very, very, very good at doing. I am sad they will lose contact with those people who have come to know, trust and love them.

It makes ALL the difference when you have to go out of state and move away from your comfortable resources at home for transplant. Back on December 10th, when I was turfed from their program, I felt this might be coming down the pipeline. Their numbers were just not happening. Nobody was being offered lungs and the waiting list was stagnant.

I am sad. Yet, my hope rests in the UNC @ Chapel Hill Lung Transplant program  and now they call the shots for me. I hope Norfolk General will take me back 1 year post transplant so I can get care closer to home. The other point is that Randy and AJQ are WAY, WAY too overworked with a tremendous patient load, so perhaps this will afford them some time to cultivate relationships in other areas, and not be suckered into the heavy demands of transplant medicine.     

July 9, 2004

I had a wonderful check up today with Dr. AJQ and everything went well. I have done so well on the triple IV antibiotic cocktail that I don’t want to stop them. Hold on....yes, I want to change something about them...the time commitment it takes to monitor and infuse 7 doses in 24 hours is excessive. It takes too much time doing it at home, but not in the hospital. I am sooo tired dealing with the midnight till 1:30 AM Vancomycin infusion followed by the 1:30 AM until 3 AM Ciprofloxacin infusion. Then I get to sleep until 8 AM, when the Meropenum is due. I’m just lamenting the fact that wellness has a high price to pay. I’d give my kingdom for 24 hours of restful sleep.

I tried to convince Dr. AJQ that really, I have felt the best ever these last 10 days than I have in a long time. He listened to my chest and wasn’t easily convinced. I am waiting on an OR date for day surgery for another Medi-port and hopefully it will be next week. Dr. AJQ was a bit leery that I’d be OK to have it done, so he decided to keep my Prednisone where it is and not to change anything, except to stop the IV Vancomycin when the prescription expires Monday. AJQ said he considers 2 weeks to be adequate treatment for MRSA. He asked what color my sputum was, so in fine Lori fashion, without skipping a breath, I hoarked out a whopping sputum sample right there for his analysis. Sputum on demand--cool!

No fevers, chills, sweats or hemoptysis. Medi-port wound is almost completely closed up, and by next Wednesday, I think we will be finished babying it and dressing it. My g-tube site has fungi around the stoma so I have a new creme to apply to that, hoping that when I go to the OR for my Medi-Port, Dr. Dimick will put a Mic-Key button in my PEG site instead of the long 18 inch g-tube I have dangling out of my stomach now.

My sister and family from Toronto are coming to visit in 10 days and I am so excited! That’s a good incentive to stay well, to show them a good time and be well to entertain my 4 nieces and nephews. Next appt is in 5 weeks with Dr. Randy “the Rat” Garnett....O cool!

July 14, 2004

Today my home IV meds were delivered and I was surprised to see they sent 16 more IV infusion balls of Vancomycin. That was the antibiotic Dr. AJQ and I agreed would be stopped Monday night, when the order ran out. Today, my home care pharmacy called his office to ask what the plan was for me and Dr. Randy Garnett authorized continuing the Vancomycin. I am disappointed to be back on the “I get no sleep” regimen but these last 2 days without any Vancomycin has seen me with a low grade fever and more copious, nasty sputum. I can’t say stopping the Vancomycin was the cause, but when I infuse the triple IV antibiotic cocktail, I feel better and breathe easier.

Have not heard from my surgeon yet about a date for Day Surgery to put in another Medi-port, but the next 2 weeks are out of the equation as my family is coming from Canada and it’s MY time to put CF on the back burner and not let it ruin this visit. The procedure will have to wait until they leave. It is elective and not urgent, although I don’t want to throw an upper extremity DVT from this PICC, then I’ve cooked my goose. Been there, did Heparin, and bled out a lung. Not a good thing. 

Tonight, my friend Donna and her family and friends came over for dinner, swimming and a movie. The pool water was so very warm at 80 degrees. We had fun lounging and laughing, and it was 11 PM when they left. What a wonderful evening we had with friends. I am very excited my sister Dolly and her family arrive Monday. Can’t wait!!!!

July 18, 2004

In my last entry, I mentioned having a low grade fever for a few days. I think we found the source--my g-tube site. For the last 5 days, I have had a very, very sore g-tube site where it felt rock hard around the stoma (hole) on my abdomen. It progressively got worse and not even 3 Percocet tabs covered my severe pain. Friday was terrible for pain and mobility issues, and on Saturday I thought I’d die from the 10+ pain. Every 4 hours, I took more Percocet, and when it kicked in one hour later, it helped calm my pathetic cries.

Last evening, I dropped the thermometer on the floor and bent over (very very slowly) to pick it up and POP! My g-tube came right out of my abdomen! Blood gushed out the hole and I noticed the balloon on the end of it had deflated and burst. Brian took me right away to the ER. I was triaged and seen after just a 20 minute wait, where I had a CT scan with both contrast dye and I had to swallow a liter of chalky barium (yukkie). The scan did not show any free, trapped air in my abdomen (this is good) and really nothing jumped out at them except a large mega-colon (due to the constipating effects of the Percocet) and swollen tissue at the site. My sweetheart surgeon Dr. Dimick was not on-call, but I did get her colleague who knew me. He wanted to reinsert a new g-tube right there in the ER. I agreed because UNC said they would like it kept in until sometime post transplant when they say I’ll use it more, and I didn’t want another hole in my abdomen. So surgeon guy tries and I SCREAM, SCREAM, SCREAM out in pain. Oh sweet Jesus how it hurt. Our favorite Respiratory Therapist is Krista, who was assigned to the ER, so she came and held my hand as I cried and writhed in pain, then she was paged to a code blue. As she left, she asked my ER nurse Kathryn (an avid Lungs for Lori web site visitor) to give me morphine for pain. It helped, but did not make the pain all go away. Surgeon guy tries a smaller sized g-tube and I cry and stomp my legs in protest. I am generally compliant and don’t show this vulnerable side, unless I am having blood curdling pain. I was. Well, add some Dilaudid and bingo, the g-tube is guided in and I have survived that assault.

Brian brings me home, and both 24 hour pharmacies in Chesapeake can’t fill my prescription for Dilaudid, stating their computers are down. So I am existing on Percocet until we can get the meds today at our regular pharmacy. I’ll see Dr. Dimick next week for follow up and will look forward to day surgery with her in August for another Medi-port.

I am doing 80% better. That was the first time ever, that I had my g-tube pop out of my stomach, and I’ll tell you, it was painful and bloody. In typical Lori style, I am a CF survivor, am home again with a new 20 French Ross g-tube, and count my blessings that RT Krista, RN Kathryn, Brian and Surgeon guy took care of me. Thank you.

July 24, 2004

I had an appointment with Dr. Dimick last week as a follow up to my ER adventure and everything went well. I was still in severe pain, although no longer at a 10+ level as before, and she checked my g-tube site and cauterized the granulated tissue around the stoma with silver nitrate. She also wants the PICC line removed ASAP before it clots off or sends an embolism my way, which is never a good thing. To that end, I have a surgical date (again) for that darn Medi-port---Wednesday July 28th. Our expectation is to have day surgery and come home, not earn a vent trial for a few days.

More good news is that I have finally been allowed to stop the IV antibiotic cocktail I have been doing for six weeks. Seems to have been some crossed wires as Dr. AJQ told me verbally I could stop infusing them on July 9th but then my home care company sent along another batch, saying they had a verbal order from Dr. Randy Garnett to continue them longer. Then Dr. AJQ faxed a stop order to the home care company on July 15th but the home care guys still sent out the meds and said I was to continue them. Yes, I have done very nicely on the IV cocktail, but I needed a break. The routine was too arduous for me to consistently do alone at home and next time, I might refuse to take on such an intense schedule at home. Better try to get some much needed rest and let the nurses do it for me as an inpatient. On one hand, I dislike going in for CF tune ups because all the crap you go through each time with doctors who don’t know you and ones I don’t trust taking over my care, plus add MRSA and other nasty hospital acquired organisms to the equation, and I’d rather be at home, yet...sometimes the at home routine is too much for me to be compliant with when I get so little sleep and all I do is infuse meds throughout the day. Well, the fine line is that I can take care of infusing 2 IV meds alone at home, but three is nonnegotiable.

My sister Dolly and the family are having a wonderful time here and we went dolphin watching just off the Virginia Beach oceanfront. It was awesome to see pods and pods of playful dolphins come alongside the boat and we enjoyed the time together. The kids have been glued to both the pool and movie theatre non-stop and now they all know how to pop home theatre style popcorn very well. My brother-in-law Kevin has had a good time, tempered with his own health issues which are more pressing than mine, and he has done the best he could despite the constant pain he endures. Bless his heart for trying so hard. Kevin is my hero.

July 28--Day Surgery

Wow! I feel as though I’ve been hit by an eighteen wheeler right smack in the middle of my right chest. The simple truth is that Dr. Dimick very successfully installed a new Medi-port in my upper right chest and I am in pain. 7 out of 10 on the Pain Scale. If ever there was a day when everything came together and worked well, it was this time around. Dr. Brock saw me in pre-op and gave me the “good to go” approval, and what I last remember was Dr. Dimick on my right side of the OR table, talking to me about one of my favorite places--the Turks and Caicos Islands in the British West Indies--seeing the Propofol snaking its way up the IV into my PICC line, then I’m out. Woke up in the PACU slowly, with a throbbing headache. Someone even drew blood gases from me and I never knew it. ABGs (arterial blood gases) hurt. Badly. Really hurt, so I always refuse them when I can protest, but this time, I got stabbed. My pCO2 was 55, which would account for my headache. Typically, as my work of breathing is often 24-30 at baseline, I blow off more CO2, which leaves me with a lower pCO2 from hyperventilating, so when my levels go above 45, it’s abnormal for me, which results in my headache. Plus, my breath smelled so vile with the taste of Sevofluorane, a halogenated volatile anesthetic gas. Every breath stunk and I told Brian I was sorry if he smelled it, because I did and it bothered me.

They forgot to do a chest x-ray in the OR to rule out the possibility of a pneumothorax so at about 7 PM, they decided to do one. A real cool x-ray tech named Theresa V. came to see me. She knew me from my previous contact with the Radiology department and she follows my progress on this web journal. Well, then they called Dr. AJQ who was on call, and he was going to get over to the hospital when he finished up at another hospital...but I wanted to go home, so we agreed I would go home and he would check the x-ray. No news is good news. Thanks AJQ.

Brian and I checked into the Day Surgery Unit at 10:30 AM for a 1:30 PM start time. The nurse asked me to get the hospital gown on right then, as in 10:40 AM. I politely declined, saying since I wasn’t going to be called to the OR until 3 hours later, I’d rather keep my clothes on and change half an hour before my OR time when I’d then get into the gown. Well, Miss I call-the-shots RN wrote in my chart that ”...patient refused to remove her clothes when asked and refused IV start.” What a witch!! I very politely declined her offer to gown and made it very clear, that I did not need IV fluids for 3 hours, did not want to have a bag of IV fluids to take to the bathroom with me in those 3 hours of wait time, and as I already had a PICC line in, starting an IV was just a simple connection of one line to another, nothing like trying to find a vein and stab me, which takes 15 minutes. But ohhhhhhhh what a nasty witchy-poo nurse she was. There, I’ve vented my frustrations.

This was a good day for us both, as Brian got to bring me home last night and I got a new Medi-port. Thanks Dr. Dimick for still taking me on as your patient with all my quirks. Brian told me I owe you a bottle of wine...so you must have been pleased with the surgical ease of the procedure. This is another road we have gone down together, Lara. The hope for new lungs continues at UNC.

August 8, 2004

I had a wonderful yesterday afternoon with friends coming over for a BBQ and just lying out by the pool. My friend Leah did all the grilling because I was tethered to my oxygen tank and oxygen in the presence of an open flame is not a good thing (think crispy critter). We grilled so much food, Brian has a full fridge to last the week. Which might be good seeing as I am not feeling that great and admit it’s time for a CF tune up. Four days ago I was not feeling that great, but I rested more, had longer naps, and slept with the oxygen cranked up to 60% (normal for me is 50%). I babied myself, and for 3 days, did nothing but lay around and never left the house. I did The Vest therapy 3 times a day and took extra care to not get sicker. I called Dr. AJQ on Friday and he faxed over some orders which my nurse took care of yesterday. I coughed out my Burkholderia cepacia smelling sputum sample and she drew labs off of my brand new Medi-port. The Medi-port access went well but we missed the first time, so instead of hitting the hub on the port, the needle went into my subcutaneous breast tissue and bled. Oh well, I counted to 3, held my breath and she tried again...Bingo! Tomorrow I’ll call AJQs office to ask if I can be seen or what pearls of wisdom he can offer as I am more short of breath and run down.

The ultimate reason for getting this taken care of now is that I have plans to fly to Toronto at the end of the month and I would not go if I felt like this. I would just be spending my time in the hospital there, and while my family is there, it’s not smart to go if I am not doing well. I am reminded of the time Dr. Randy Garnett read me the riot act that if I went on the Bahamas cruise with my family just 3 days after I was to be released from the hospital, he would have serious issues continuing to be my doctor if I would so blatantly ignore his best medical advice and do whatever I wanted, possibly putting in peril the whole cruise ship. Those were strong words of caution which have not lost their intended effect on me, as I waved Bon Voyage at the dock while they all cruised and had a great time. So....tune up time for Lori, possibly. I count on your prayers to sustain Brian and I so please remember this need and that the road to transplant will give me a new chance to breathe normally, again.  

August 16, 2004

Short and sweet. I’m home. Dr. Randy Garnett admitted me last Monday from the ER and I felt well enough yesterday to beg to be discharged home. It even surprised me how quickly I was able to turn around. Bad thing? I gained 20 pounds! I was up peeing out a storm every hour last night and I was upset to see I’d come home looking like a big whale. Add to that a ravenous appetite and now I’m a mess.  I am a “Prednisone Princess” right now. My white blood count went as high as 42,000 (normal is from 4-11,000) but with the steroid insult, fever and nasty sputum, it should not have come as any surprise that my blood work was bonkers. My hemoglobin was low (at 7.3) so I had 3 Procrit injections to stimulate my red blood cells into making more healthy marrow. Hey, CF is just running its course and doing what it is programmed to do...cause death.

My sputum grew out Burkholderia cenocepacia which is only sensitive to Cipro and Zosyn, so I am taking those antibiotics by IV for 2 weeks and expect to feel better. This routine is so much more manageable for me and will be easy to comply with. I did not grow out any MRSA in my sputum this time. A home care nurse just called and is coming over to do the admission paperwork on me now. I have tentative plans to be in Toronto next week however I might cancel them, waiting until I feel better. I am going to end here as I feel like a space cadet. I’ll touch base later.

2 days later...

A gentleman from our church came by today with a Rascal scooter to loan me until I am transplanted and no longer would need to use it. Rod Fombell is his name. He has “adopted” Brian and I and keeps an eye on us and prays for us. I had mentioned that everyone here on our street has a golf cart as the driveways are so long that getting the mail and the paper can be a 10 minute walk, and that it is difficult when my shortness of breath is severe. Some days I don’t even go get the mail because I am too sick. I said it in passing and never meant to drop any clue or anything but Rod delivered a perfectly brand new scooter today for me to scoot around. Brian and I were both so very honored that he would think of me, and then have it delivered and ready for duty. What surprised me most was that suddenly I was the recipient of something wonderful, rather than being the giver of something wonderful. My parents taught me that it is better to give than to receive, and that any rewards I think I might be entitled to here on earth, are nothing compared to the jewels I’ll look forward to when I get to Heaven. I am blessed a thousand times over when I can give something to another person and meet their need. Sometimes God speaks to me in His still, quiet voice and lays their need on my heart, and when that happens, I always tell Brian that the Lord has spoken to my heart  and I am being used to accomplish something the Father alone knows all about. There is a brand new refrigerator in Connecticut as a result of the Lord allowing me to meet the need of a family who fell on hard times financially and needed one. There is an oven in Hamilton, Ontario for a lady who could not afford one as her medicine was more important, so she chose to pay for the medicines but could not afford to have her 25 year old oven fixed. The Lord knew her need and allowed me to  provide for her. There is a family who needed help to pay for a funeral, and the Lord used me to make it happen. For all those times I am willing and listening for the Lord to use me, it is never ever with the expectation that in return, I too, am entitled to anything. I am worthy of nothing, but God gave his Son as payment in full for all my sins, so that I could have an eternal measure of joy beyond anything earthly. So amen for Rod and for blessing me in this special act of kindness. Vroom vroom...this scooter is so cool!

Friday August 20, 2004

Decision time....I have been praying for the Lord’s direction regarding transplant issues and one of my hang ups has been that I was determined to stay put right here at home in Chesapeake until UNC called to say “we have lungs, come on down!” In doing so, I was just seeking to protect my emotional investment in being close to Brian and feeling safe at home. I didn’t want to spend months away from him waiting...waiting...waiting for the call to come and then like my friend Eileen, she went to Duke, got the new lungs, and died 3 weeks later. My point being that all that time waiting would be done here at home, so I could be closer to my support network, my family and my doctors. I rationalized that it would be easier financially to just have one residence as we saw how difficult it was for my friend Shannon to move to Durham and wait for her lungs. She waited 6 months until she finally got a donor, but that was 6 months of carrying 2 house payments and 2 sets of bills for everything. Plus, she stayed 4 months post transplant, so in all, it was quite an emotional and financial burden to have money for 2 residences. But ya know what?? The Lord provided for ALL her needs, and to ask her now, she has no regrets. Well, we left this with the Lord and said we will trust Him for direction.

Yesterday, my home care nurse called. Melissa has been my personal RN for 2 years and Brian and I trust her completely and love her. It has been Melissa who has driven me to the ER when I was blue and breathless, and she has been the one to advocate for me when the desk clerk on the front lines of the ER had me wait and wait and wait ....with all those non-emergent, ”I-don’t-have-a- family-doctor-so-I-will-abuse-the-ER” cases, until I was almost dead. Melissa has stepped in and asked that I be triaged stat. I like her.

Melissa has been accepted to Duke University to start graduate work in January 2005 and she will have to move to Durham for 2 years. This is coming together to possibly be the answer we were praying about. Perhaps it might work out that she could be my RN and live in support while I wait for those precious lungs. We are just now throwing ideas around but it might work out for both of us. She would be going to Duke and I’d be waiting for lungs at UNC. I could go to Pulmonary Rehab at Duke (I like their program) and be available locally for lungs. Wow. Now I can see new possibilities. I would not be that “needy” pre transplant and would continue to be able to get around and attend appointments on my own. Post transplant, I will be dependent on my volunteer caregivers 24/7 to help me progress, but as I did not have a person who could step into this role pre transplant while waiting, that was a compelling reason to stay home with Brian and wait until I got the call.

This door has been opened as a direct result of prayer. So if we all decide this is the better option for me, to be ready and waiting in Chapel Hill/Durham, it would mean having an apartment/house ready for occupancy in January 2005 and allowing Melissa to first settle in and start classes, then I’d move down later that month. The wait for lungs could be from 1 day to months, but as UNC has told me, I could possibly be a back-up in case the first person is not ready for transplant, and being right there locally, would make all the difference. Dr. Egan said if I were to stay at home in Virginia, I would not ever be a back up case and would possibly miss a chance (or 2 or 3) at transplant. Hmmmmm....so today I ask myself honestly, do I keep denying that my quality of life is slipping away and I am less able to enjoy things and admit that I am in End stage CF and have to take this next step, or continue to play the game of denial and just hope things will fall into place when I am on deaths door?

I’m asking for your prayers that the right decision will be made. Now...I’m off to see Dr. Randy Garnett for a hospital follow up appointment. Will update y’all later today.

My appointment went well with Dr. Randy Garnett. It usually is a pleasure to see him as he has an upbeat personality with a mischievous smile. He is the kind of doctor who relates well with the patient and has a good bedside manner. When the chips are down and it’s do or die crunch time, he is one of the doctors I want calling the shots. I gained 6 pounds since my last visit but it’s Prednisone weight which I can pee off. My O2 sat was 100% which surprised me as my nail beds were dusky, yet it read 100% so no complaints from me. He thought my chest sounded like crap (his words), while I thought it was just the usual me and I wasn’t concerned. I’ll begin a Prednisone taper, slowly decreasing the dose by 5 mg each week until I get as low as I can tolerate, plus I’ll stay on the oral Cipro. The IV Zosyn is scheduled to stop on Sunday and we’ll finish it then. My sputum grew out my usual gram negative micro friend, Burkholderia cepacia which is sensitive only to Cipro and Zosyn, and resistant to everything else including Tobramycin. That is interesting because I am inhaling Tobi twice a day for alternate months. I asked why am I inhaling Tobi if I am resistant to it and was told that the inhaled dose is so much more potent and directed into the small airways that it is still beneficial even when the sputum cultures say otherwise. More good news is that I did not grow out MRSA this time. I have noticed a pattern that on those months when I am on Tobi (and off Colistin) I do poorly, yet we have to rotate the 2 meds so that resistance will not develop and then neither might be effective. Tobi and Colistin are 2 drugs most adults with CF inhale (who have cepacia issues), aside from some experimentation with inhaled Fortaz, which smells vile and wretched. Years ago, a long time ago, I inhaled Mucomyst (we called it Pukomyst) it was that bad. It smells like rotting eggs and makes you gag, wheeze and cough, yet for years, it was the mainstay of CF treatment to rid the lungs of thick globs of sputum.

My journey to Toronto is on hold as I am not feeling quite chipper enough to go and be confident I’d stay well. To go might mean if I were worse, I’d be admitted and spend time up there in the hospital which just wastes the whole trip and would not be a smart thing to do. My family understands and they love Dr. Randy Garnett, so they back him up 1000%, that I ought to stay home if I am not feeling better. Dr. Garnett asked instead that I have blood work drawn and if my wbc is normal, then it would be more encouraging for me to travel, and I’d only be on oral meds, so that is possible. If however my wbc is high again, then somewhere there is a nidus of infection brewing and he’d prefer I stay closer to home. We are both adults here and while he can’t ground me, he would offer his best advice, and I am not stupid enough to ignore his advice when the constellation of symptoms support his (and my) fears of possibly being sick in Toronto. I trust Randy. So.....compliant Lori here will wait until Monday when the lab results are in, call his office, and decide what to do.

As I have plans to be in Nashville in September for a meeting of the National Association of Medical Examiners, I don’t want to jeopardize going, so I’ll do whatever is reasonable to protect that time and go there feeling well. So to close, I am holding my own and nothing drastic is happening. I’m back to see Dr. Randy in 2 weeks just so he can keep his eye on me.

I am having terrible cravings for pumpkin pie! My mom used to bake the most wonderful goodies and oh boy, could she ever make pies! Sizzling apple pies right from the oven flooded the house with wafting aromas of everything that was good. Her lemon merangue pies were so light, fluffy and zesty, you had to have a second serving, but my favorite has always been pumpkin. And lately, I get these craving were my taste buds melt and water at the thought of hogging a whole pumpkin pie to myself, drizzling it with Cool Whip and eating it all by myself (no wonder I’m fat) and I’d save Simon (the cat) a bit of the Cool Whip, but not a crumb would be left. Why this nostalgia? I really miss my mom. She has end stage Alzheimers and has been in a nursing home in Toronto for 4 years now, just wasting away to nothing. Her mind is gone, but her body still holds on. Some days, I wish God would come and take her home, painlessly, just snatch her up and finally, her new life in heaven begins forever. But even in her presence here, while she can’t talk, walk and doesn’t know who I am, she is still my mother whom I love deeply, and one day, we will both be together in heaven, and up there, she’ll be baking those wonderful pies. Make mine pumpkin, mother dear!

I’m Home

Have you wondered where I had gone? Why I hadn’t written? 2 words sums it up:  Club Med. As in Norfolk General Hospital as a guest of His majesty, Dr. Randy Garnett...and I needed it desperately too. Let’s just be frank and admit that CF is winning the fight. This time, I was put on the ventilator in the ER, while they decided what to do with me. I am always fearful that Brian will be in shock when he comes to visit and finds they have vented me without being forewarned. I try to protect him by asking NOT to be vented until I can tell him ahead of time, to spare him the surprise. This time however, he and Randy spoke about it on the phone and agreed it was the next step, so Brian was prepared. This admission went well. I survived to come home alive. I also gained 15 pounds, but it is temporary fluid retention which I can pee off. Home care just delivered my IV Zosyn to be infused every 6 hours. I had expected another 2 IV meds, as Dr. Mooney said I’d be going home on 3 IV meds, and I grunted that in doing so, I get no rest at all and come back feeling worse, but for now, only 1 med IV is being delivered, so I’ll not complain at all. This admission, I also had a blood transfusion as my hemoglobin was quite low. I think it got to 7.4 or so, and Randy suggested a transfusion, which I usually decline because I have already picked up TWO donor antibodies from previous transfusions and it’s not like I want to go around collecting any more. It makes transplant a little more dicey when they have to factor in antibodies, but I listened to Dr. Randy and agreed.

I am taking 30 mg of Prednisone every day (BLIMPO!!) and have wicked cravings for ice cubes and pumpkin pie, but with some discipline, this will pass. I returned home to find 1027 e-mails (half were junk) and news that 2 of my internet e-pals with CF had died. Tracey and Jennifer were both listed and waiting for their lung transplants and both died suddenly. My e-pal Jennifer had a wonderful way with words and also kept an on-line transplant journal for all to read. I read their obits online and silently wept. It could easily have been me.

Dr. Randy Garnett read me his mini version of the Riot Act and thusly, of course I had to cancel going to Nashville for the Medical Examiners conference. He hypothesized I’d be sent back via air ambulance or worse, sent back in a pine box. He can be so dramatic. He also asked me not to drive when my O2 sats are low (below 90%) as being hypoxic and driving are not always compatible. You need mental alertness when driving and when your brain senses low oxygen levels, you can be a bit “squirrely” and for me, I feel like a “space cadet” when this happens. OK....make a note here that Lori agrees with him and will follow his advice about not driving. This is a brownie point for me because I am following his request, so everybody take note! On my discharge day, he was very frank and said he can see the writing on the wall, but can I? He sees my CF admissions are more frequent and lasting longer. That my time spent out of the hospital is not always quality time. CF is winning. He said my sole focus ought to be getting ready for transplant and not flying off to Toronto, Nashville and various places at this time. I half agree. He said I have a cavalier attitude which gets me into trouble, but I never have, nor will I, let CF so dominate my life that I forget how to live and only focus on being a subservient, docile patient. Yes, transplant is a very serious and complicated issue, I know what my options are, and I choose to live and enjoy everyday I have and not just devote myself to caring only about breathing and being the perfect patient, while losing sight of the substance that makes me “Lori”. Life can be so fleeting...gone in an instant, so you ought to live life to the fullest. I have to live today as though tomorrow won’t happen and to have no regrets, yet at the same time, make some allowance for CF to ruin my day. That being said, I am booked to be in N’Awlins in February for the American Academy of Forensic Science annual meeting as well as possibly going home to Toronto for Christmas. If I don’t live to make it to transplant, or die trying, being home for Christmas is very important to me. So understand this, dear doctors of mine: I am living, not dying.

Brian was a real trooper, holding down the fort at home and keeping things running for the three weeks I was absent. Our well pump died, meaning no running water or ability to flush toilets, or even to shower. Brian had to call a plumber, and it cost $250 for his weekend emergency visit and a part. The next day, the plumber returned with a new well pump and for another $1200, everything was fixed. Then our Ecolo-chem water conditioner ran short on salt, so Brian made due with a 20 pound bag of salt until the company can come this week for a check up. Plus, I came home to 16 bills which all needed paying and 6 upset kitties who felt I had neglected them. Good news? That I came home alive is the best news. That I am making small inroads into securing housing in Chapel Hill/Durham for January is ongoing. That my sister Noreen is flying down in 12 days to visit me is awesome. That I have physicians who really do care about me, is nice, and that Brian will always be there for me, is love to the highest degree.

I also had visits from folks from our church which was wonderful and the prayer group prays for us always. We are getting some torrential rainfall here and our whole property is soaked with standing water. The sun is shining now after a heavy rainfall all morning and today is a wonderful day to be home and thankful for being alive. Time to end here and write more when something important crops up.

My favorite Bible verse is Jeremiah 29:11, which says,

“I know the plans I have for you”, says the Lord, “plans for good and

not for harm, to give you a future and a hope.”

Saturday September 18, 2004

This IV med called Zosyn is making me to be not a nice person. I am very nauseated with it and throw up, which means the anti-nausea pills I take an hour before the Zosyn, come back up too, only in little pieces. Not pleasant. It is a problem enough to make me noncompliant with the Zosyn. Don’t infuse it, don’t throw up, right? Hmmmm...

Brian drove me (because my O2 sats were too low for me to safely drive) out to see Shannon at her part time job today. She works in a gift store and I had to bring her some ribbon for the Christmas wreaths she is making for us. It was nice to see her again and chat. Both Shannon and her sister Lori, are transplant miracles. Shannon and I will do a UNC road trip in October when I need to go check out housing. Brian was going to go with me but Shannon knows Durham/Chapel Hill very well, and can navigate. She lived there for a year and I am clueless about the area. I just have to line up a few more places for us to see, and we will go. Of course, we have to stop into the Cracker Barrel restaurant on the way down, as we love their Southern store. Brian is spending this afternoon at a Radio fair in Virginia Beach and was hoping to buy some equipment he might need for his radio station, WBDH Radio. 

It’s time for my nap, as I am quite tired and it’s time to lay down, crank up the O2, and sleep. Looking forward to church tomorrow. Hugs from Lori.                  

Monday September 20, 2004

Just me again checking in. I recently found a software program which will let me log onto my home computer from any internet enabled computer in the world. This means when I am in the hospital, I can log onto my home computer and update this journal. That is cool since until now, I have been leaving large gaps in time when I am in Club Dead for a CF tune up. On the River Pavilion of Norfolk General (where I am always admitted to) they have wireless computers on carts that can be rolled into the patients room, so hopefully this will be my way to log on when I am in Club Dead.

My nurse Melissa is coming over soon to draw my blood for Monday labs and to re-access my Medi-port. Every 7 days, we have to change out the Gripper needles to fresh ones as long as I am doing home IV therapy, which is scheduled to stop October 7th. My O2 sats are better today: 92% on 8LPM.

My sister Noreen flies in next Monday to spend some time with me. I am so ready for her to come. I think it is getting a bit too chilly to swim in the pool but the hot tub is a go! We will just laze around and do nothing. Whatever. I am restrained by my oxygen requirements when I go out, as in figuring out how long my liquid portable will last and what do I do when I run out of oxygen, which happens frequently. Why? It’s hard to estimate how much O2 is in the liquid portable and how quickly it is evaporating. At 6 LPM, I can get 1.5 hours, then I run dry. So my back up is to have some green “E” cylinders in my car. This whole last week, I have been needing more O2 than my current portable system can supply, so I have had to be housebound, where my home supply is plentiful. I have 2 very large Puritan-Bennet Liquid Stationary systems which hold 100L of liquid O2. From that, I refill my portable when I leave the house. Every Friday, Eastern Oxygen comes to refill my tanks. The liquid portable can go up to 15 LPM, however it can only supply up to 50% max FiO2, and I have been requiring 60% FiO2, which is more than the portable can do. That means staying home so I can be connected to my Bunn Humidified blue corrugated tubing system. This impacts my quality of life when I am stuck at home, under house arrest, and I very much dislike this. I am an adventurous spirit, and I don’t like being “restrained” because of CF issues. I like to come and go as I can and do whatever I feel like doing, but being tied to the home O2 system is something I hope is temporary. The options: 1) oxygenate well on 50% FiO2 and maintain adequate O2 saturation’s, or 2) this is my new baseline, that I need 60% O2 and get used to it, Lori. Those new lungs are looking sweeter all the time. I can imagine my life after the transplant and leap to the part where my tracheostomy is reversed and removed. Oh how wonderful that will be. It will be more than an answer to prayer, it will be the end point of a whole lot of suffering on my part. Now I don’t often complain about “whoa is me” or “poor Lori”...but I do dislike this trach. Yet there is one excellent thing about having it---it is so very easy to put me on the ventilator when I am experiencing respiratory failure. Just connect me and that’s it. Set me up for PSV of 15-18 (Pressure Support Ventilation), dial up a PEEP of 8-10cmH2O, and with no gagging, or intubating  or paralyzing me to ventilate me, I can say the tracheostomy has been beneficial. Doorbell ringing...Melissa my nurse has arrived so it’s time for blood work and Medi-port care. Let’s chat again soon.

Friday October 1, 2004

I have had a good week, health wise. My sister Noreen is here from Canada and most days are laid back as we sleep in until 11 AM and lounge around doing nothing. It’s perfect. We’ve gone shopping for Yankee Candles and pumpkins, and spent hours in one of those huge, craft and home decorating mega stores. I am still infusing IV Zosyn every 6 hours, taking Doxycycline and inhaling Tobi, plus add 30 mg daily of Prednisone and don’t forget the liquid oxygen. My O2 sats have returned to normal (greater than 92% for me) so I am back driving and randomly spot check it to make sure I am not hypoxically impaired.

Today I had a pulmonary follow up appointment with Dr. AJ Quaranta and it went well. I told AJQ I had a good week. I mentioned I am troubled by my increasing chest pain and use of Percocet, using it more frequently some days when my thorax and ribs absolutely kill me with severe pain, yet I don’t want to be labeled as a chronic pain patient. I think it is pain related to the demands of struggling to breathe plus the constant coughing, which in a patient with end stage lung disease (like me), apparently is not out of the ordinary. At this point, Percocet relieves it. Daily morning headaches continue to plague me and this too, is related to end stage lung disease, as one retains excess CO2.

My blood sugars have been low (55; normal = 70-120) but I have not felt symptomatic. I have had the morning jitters but I wrote this off as being a side effect of nebulized Albuterol. Morning sweats were attributed to fever. However, these are also signs of hypoglycemia and now make sense. Hypoglycemia can be caused by: 1) taking too much insulin (I don’t take any!); 2) various medications; 3) starvation; 4)insulinoma (tumor) and 5) other factors. The only one which might fit me remotely is skipping morning breakfast, so when my nurse draws my blood before noon, I have not eaten and have a very low blood sugar. My family doctor, ordered more blood tests to further pinpoint the etiology of my hypoglycemia and if it’s anything worrisome, he’ll call. AJQ also advises supplemental iron, but that stuff just rots my gut out and so I am not compliant, which means I refuse to take it. It doesn’t matter if it is put down my feeding tube or if I swallow it, iron is just plain old nasty stuff, and when it sits in my stomach, it causes nausea and a feeling of being punched in the gut, so no iron for me unless it comes in the form of spinach and other veggies.

Just one more week of antibiotics and I’m finished this round. My trach is smelling a little bit funky, so I’ll watch to see (and smell) if anything nasty develops. I was blaming Brian for his bad breath, when I discovered the source was my own trach. I apologized to Brian. He is very understanding and God constantly blesses me with the affection and compassion Brian shows me. He is right there, going through this with me.

Next weekend, my nurse Melissa and I are doing a Durham/Chapel Hill road trip to look at 4 housing opportunities for the move in January. Shannon and I were going to do it, but then it was decided that Melissa ought to have some say where she would like to live so it will be Melissa and I meeting with a leasing agent in Durham who will show us properties I have pre-selected. Our number 1 requirement is: no cockroaches! Will let you know what happens.

Wednesday October 6, 2004  

My lung transplant coordinator at UNC is Becky Cicale and she just called. She needed to know my current weight and how I was doing. I told her my weight (gasp!) and confessed I am having a difficult time losing weight. I have radically changed my diet and eating habits, but I am not able to increase my exercise tolerance much more to go along with weight loss. Dieting alone won’t result in significant changes when you don’t add exercise into the equation. My problem is that I am so short of breath, which makes exercising difficult, and I don’t do enough exercise to burn significant calories. Factor into the picture my dose of Prednisone (25 mg) and I have set myself up for failure. UNC said they have had B+ lungs which could have been mine, but my weight turned me down. They also said very rarely, do they manage their CF adults on oral Prednisone, and only at 5-10 mg max, not anywhere close to the amount I take. So I am in a catch 22 situation. Take Prednisone to breathe and then blow up like a blimp, which means more weight gain and equals no lungs.

UNC wants me to go on down and consult with their CF team, where they think they can fine tune my drug regimen and turn things around so I can begin to lose the weight, which will open the door to transplant. Of course, this is not a new issue--just read my past journal entries and see that all along, losing weight has always been a criteria for me to receive lungs. So why the urgency now? I am having more frequent hospital admissions, being ventilated frequently for respiratory failure, have Burkholderia cepacia and MRSA, the clock is ticking and time is running out.

UNC said they believe I am a good candidate for lungs even with the Burkholderia cepacia bug, and Becky told me they manage 40 CF adults with this same bug, so I should be seen where they have experience with my CF issues, and to work with them to achieve better pulmonary control. To this end, they will book me a CF clinic appointment to see Dr. Scott Donaldson and it will be my decision whether to transfer all my CF care to UNC or to just use them as needed and to still have admissions to the hospital here in Norfolk with my current doctors (AJQ and Randy). When I move down there, it is expected UNC will take over my care, including inpatient admissions to their hospital. It’s a scary leap for me as Norfolk General has been my second home, but this is a step I must take until I can return permanently home to Virginia post transplant.

I told them I am going down to Chapel Hill/Durham this weekend to secure housing for January 2, 2005 and to start their pulmonary rehab program. I have to do this to get transplanted, cuz what I’m doing now, ain’t working. Hearing from Becky today clarified some issues and helped me understand I have to double my efforts to lose weight before CF kills me. Ironically, this is a problem only 15% of adults with CF deal with--having to lose weight. The other 85% of CF children and adults are struggling to gain weight, which is the norm with CF, yet I fall into the small minority needing to dump the pounds to get lungs. Funny how phenotypic characteristics for the same disease, can differ so widely. That’s my news for today. My sister Noreen is packing her suitcases as she flies home to Toronto tonight. We had a wonderful visit and I hope she can come back next year, perhaps while I am recovering in Durham/Chapel Hill. I am hopeful each of my 5 sisters can make the journey at various times, to help me recover and to lift my spirits as I begin my new life with normal lungs.

I’m off tomorrow with Melissa for a weekend road trip to sign a contract on housing starting January 2, 2005. I am actually quite excited about going and doing this, and will have my SUV loaded with 10 oxygen tanks for the ride. I am also going to visit my friend Lori (Shannon’s sister) who is in the hospital at Duke with medical issues related to her lung transplant. Please say a prayer for Lori J. More when I return in a few days. Hugs from Lori. 

1 Corinthians 2:5

                     ..that your faith should not be in the wisdom of men,                       

but in the power of God.

Monday October 11, 2004 (Canadian Thanksgiving)

If I were home in Toronto today, we would be celebrating Thanksgiving. It would have been nice to get together with my sisters and just hug them closely and tell them I miss them and love them.

I had a good time this weekend in Chapel Hill/Durham house hunting. We got lost so many times just trying to find our hotel, that I really appreciated having our leasing agent Kirsten, navigate all day Saturday to show us the way. Long story, short answer: no house yet. Considering I personally picked out 3 of the must see condos/apartments, I was disappointed in a few of them as they were dirty, smelly and not any place you would want to live while waiting for a transplant. I am thinking I’ll make another trip soon to check out a few more prospects. My first choice was very nice, however the owner wants it leased starting December 1st, and I don’t want to move in until January 1st, and will not pay a months rent for nothing. I have left this concern with the Lord and if it’s not to be, then it won’t happen. The only problem is that it has a set of stairs to get to the master bedroom on the second floor, and I know from my own experience with my first home, that there are times climbing those stairs to get up to bed can be very difficult when you can’t breathe. Plus Brian reminded me of the same...stairs are not ideal for me. The second place we went to was a condo which was very nice, and all on one floor, but only two and a half baths, so I put it in my back pocket in case my first choice falls through.

I also went to visit my friend Lori who was in the hospital at Duke and doing much better. She is weak and anemic, but when she smiles, everything lights up and she is so appreciative for friends who call and cheer her up. It was good to hug both her parents too, who were there for the whole weekend. My nurse Melissa drove all the way home in my Lincoln Aviator and enjoyed the smooth ride. Other than being so totally exhausted, it was a good weekend.

Something weird happened a night ago. I was sitting at my desk at 9:30 PM when suddenly, I was overcome with frightening symptoms: tremendous nausea, feeling very weak and I almost collapsed, profuse sweating and a feeling of impending doom. I staggered to the bathroom thinking I would vomit but nothing came up. I was sure I was going to collapse right there on the tile floor and Brian would find me hours later. My confusion and weakness were very severe and then I sweated so profusely, I drenched my clothes. This lasted 20 minutes. I made it to my bed, lay down and half an hour later, paged Brian and told him what happened. I drank Gatorade to get rid of the vomit taste in my mouth and then it quickly resolved. By 10 PM, half an hour later, I was almost normal again. So I went to the internet and searched out the differential diagnosis and have come to believe I had a severe episode of Hypoglycemia. This is new to me and I have never had this problem before. I have had a few low blood sugars, but unless they took blood and told me so, I would have never known, because I have never had symptoms, until this time. So if indeed that was hypoglycemia, it sucks! But it did clear with a sugar laced drink rather than having too much sugar and needing insulin to bring it down, as I am not a diabetic and don’t have any insulin in the home. Why would I? The previous week, my blood glucose was 55, then last week, it was 51. Who knows what it fell to when I had this episode? I guess I ought to have more protein in my diet and to make sure I have some candies in case it happens again.

Sunday October 17, 2004

Every day the Lord gives me something to keep my hope alive. Today, it was one of my favorite hymns, “Great is They Faithfulness”. The stanza where the tears flow down my cheeks is when I sing...”strength for today and bright hope for tomorrow.”  

Great is Thy faithfulness, O God my Father;
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not;
As Thou hast been, Thou forever will be.

(chorus)
Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!

(chorus)

Summer and winter and springtime and harvest,
Sun, moon and stars in their courses above
Join with all nature in manifold witness
To Thy great faithfulness, mercy and love.

(chorus)

Pardon for sin and a peace that endureth
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

I had a wonderful yesterday doing nothing. I stayed home all day and just puttered around doing things. Getting important papers in order, working on the internet at finding housing in NC, and just enjoying what an awesome day God gave to me. I opened my office window and heard the birds singing. My cat, Jackson, saw and heard them as well, and “chattered” along at the birds. The sun was shining so brilliantly that as I sat back, I realized that today was made perfectly for me to enjoy God’s handiwork. Everyday has to hold some wonder in it, and when I have a good day, like yesterday, I am more hopeful that I’ll get new lungs. Some days, I slip into the “doubting and despair” mode and think I’ll be the 3 out of 4 on the waiting list who die waiting. Maybe so. I can’t rule it out. 20 people a day, 20 PEOPLE A DAY, die in the US from lack of suitable organ donors. I could be one of them who dies waiting, so I have to be factor this in to my mental and emotional health and be prepared. There is a limited supply or hearts, kidneys and lungs out there folks, so think about this when you are in the terrible position of making that decision for your loved one, when the doctor has sat you down to tell you all the tests show your loved family member is clinically brain dead....but that through their gift of organ donation, many others can have a second chance at life. It is a random act of kindness of the highest magnitude, after of course, Jesus dying on the cross for all sinners, me included.

We didn’t go to church today, sadly, as I had a slight fever last night and didn’t want to potentiate any brewing sickness by being around a bunch of other people incubating various colds and germs. As the flu shot is in very limited supply here, I won’t be one who gets it this year. I’d rather see my dose go to a frail, nursing home senior who is more likely to suffer worse consequences if they do get the flu, than I might if I get it. Plus, I added more Lasix this morning to my regimen which had me peeing every half hour for 3 hours, as it squished every little drop out of my kidneys. This makes it uncomfortable to go out when you have to pee constantly. I try to time the Lasix dose according to what I have planned that day, exactly just so I don’t have to miss church or a day at the office or an early morning appointment. Tuesday is (hopefully) my final road trip to Chapel Hill and Durham to secure housing for January 2005. I’ll tell you all about it when I return. Hugs from Lori

Sudden DeTour

I am urgently flying home to Toronto as my brother-in-law is near death. Kevin has endured the ravages of Adenoid Cystic Carcinoma (cancer of the adenoids, tonsils and sinus cavity) for 6 years and it has run its devastating course. He had a spontaneous brain hemorrhage early this morning and his wife (my sister Dolly) has been told this is a fatal event. Kevin is just 45 and they have 4 great kids, all under age 14. Kevin is unconscious, breathing on his own and heavily sedated. It’s up to Kevin now to let go. He has fought the good fight, finished the race, won the prize. Heaven awaits. Jesus is soon to wrap His ever loving arms around Kevin and welcome him home.

Tuesday October 19

Kevin died. Dolly was at his side at 1:30 AM when his Angel came to bring him home. Home to Jesus.

HAYES, Kevin Edward - 45, died Tuesday, October 19, 2004
                       at the Princess Margaret Hospital, Toronto after a long
                       courageous battle with cancer. Beloved husband and best
                       friend of Dolly (Morris) for 16 years. Devoted father of
                       Zachary, Sarah, Lucas and Emily, all at home. Dearly
                       loved son of Jackie Hayes and the late Edward Hayes. He
                       will also be sadly missed by his brothers Brian (Louise)
                       London, England, Terry (Monica) Waterloo and sister,
                       Cathy Hayes-Donau (Rick) Kitchener, as well as by his
                       nieces and nephews and the Morris family. Visitors are
                       welcome to share their memories of Kevin at the JERRETT
                       FUNERAL HOME, 6191 Yonge St., North York (2 lights south
                       of Steeles) from 2 to 4 p.m. and 7 to 9 p.m. on
                       Thursday. There will be a celebration of his life at
                       Willowdale Baptist Church, 15 Olive Ave., Willowdale at
                       1 p.m. on Friday, officiated by Pastor Paul Allen and Father Frank Manno.                                          Interment will be in York Cemetery.
                       In Kevin's memory, donations may be made to the Juvenile
                       Diabetes Society, the Canadian Cancer Society or the
                       Gideons International in Canada. ''I have finished the
                       course, I have fought the good fight, I have finished
                       the race.'' Timothy: 2                        

Tuesday October 26

I’m still in Toronto attending to family matters. Nearly 700 people came to the funeral home to visit with Dolly and in my opinion, Dolly did remarkably well, greeting every person herself and standing strong. The Lord carried her through a very rough time. The service was held at their church and it was standing room only, with over 500 people attending. The eulogies, music and message were wonderful. This was a funeral which was uplifting and filled with Hope, because as a born again Christian, Kevin had spiritual hope when all medical hope had failed. The four Hayes children (my nieces and nephews) are dealing with their emotions privately and differently, and my request of you, dear reader, is to include the entire Hayes family in your prayers as they seek to give God the glory in their grieving and healing.

I also met up with my Toronto friends at an Irish diner and we caught up on stuff. Here is a photo of the “Government Gals”, whom I worked with for 2 summers as a University intern. Pictured are... me, Jackie, Susan and Jill. Each received a new “Lungs for Lori@ Chapel Hill” T-shirt. Jackie and Gail (not pictured) have signed on as a “Lungs for Lori” volunteer to donate a week of their vacation time to fly down from Toronto (Canada) to Chapel Hill and be part of my post transplant support network. Volunteers will live with me in the new house I have leased (each of the 2 guest rooms have a full, private bath) and to chauffeur me to appointments, get me to pulmonary rehab, help with laundry, shopping, etc. Things that I need help with after I am released from UNC but still have to stay nearby for another 3-5 months while on the road to recovery. I imagine it will be mostly quiet times in the evenings, when there is nothing much medical to do to me. No more Vest Thairapy treatments, or nebulizing Pulmozyme, Tobi, Colistin and Albuterol, or running in all too frequent IV antibiotics for CF cepacia bugs. Yes...what a change it will be. Which is where my faithful volunteers come in and are crucial to my recovery. Perks include: getting to drive my cool Lincoln Aviator SUV, staying in a real nice house in a wonderful community (Governors Village), football games at UNC, getting to see me blossom from a pulmonary cripple dependent on oxygen 24/7 to a new woman, and watching as I grow by faith along the way. So....any new volunteers out there??

Monday November 1, 2004  

I’m home. I visited my mother at the nursing home yesterday in Toronto after church and held her hands clasped inside mine as I told her I loved her. Silence. No response. Blank stare. I thanked her for being the best mother God had chosen for me (I am adopted) and looked in her soft hazel eyes and said....”I’ll see you in Heaven next time, mom.” Then I was interrupted by 2 roaming, male, demented inpatients, one of which kept pulling his fly down. My sister Noreen and I tried to reorient him but with Alzheimer’s, it ain’t happening. He kept trying to show us his weenie and Noreen asked a nurses aid to intervene and guide the man to his room. Sad thing is that Noreen had met the man’s son and said that the man was quite an educated person before dementia took his mind away. This is life on the Alzheimer’s ward. Then I held my mom’s hand and prayed something different. I asked God to not let mother linger in this catatonic, zombie stage much longer. Mom’s personhood had long been stripped away and she was ready long ago to go be with Jesus, but her body has not betrayed her as her mind has. I selfishly asked God to call her home and take care of her in Heaven. I told her I loved her again and kissed her on the forehead, caressed her frail, wrinkled hands, and turned towards the door with tears in both eyes.

Now I am in Virginia. I am in need of a lot of sleep plus a pulmonary tune up to turn things around so I can enjoy Thanksgiving. I had a fruitful time in Toronto and being there did not “make me sick”. The nature of CF is to cause problems when it can, and yes, I did run myself down with family commitments I had to do, but I had a wonderful time, did what needed doing, and have no regrets for having gone home. Unfortunately, CF does not distinguish between important life events and trivial stuff, yet it still seeks to control and run my life. I have an appointment with Dr. AJQ tomorrow and his advice will determine what happens next. My gut feeling is I am going to be admitted and I feel it is the right thing to do. No skirting the issue, I need aggressive IV antibiotic management and I am not going to take on the task of doing it at home right now. Also, I KNOW when a few days on the ventilator are the best course of action for me, and I am getting to that point. My oxygen saturations (O2 sats) are lower than my usual low and I am wiped out. Plus, every day in Toronto, I woke up with noticeable swelling. My eyes were very swollen and puffy, my fingers looked like puffed marshmallows, and my socks left circles around my ankles from the elastic in them, so for some reason, I was retaining  more fluid. I told my sister I think I am on my way to respiratory failure. I increased my oral Lasix to compensate and yesterday morning, things were greatly improved. Prayer worked again. I also had to increase my oral Prednisone to get me over worsening shortness of breath as I did not want to be admitted to the hospital in Toronto, so I emailed Dr. AJQ for advice and took action accordingly.

My friend Rod Fombell, teaches a Sunday School class of sixth graders at Great Bridge Baptist Church and they have been praying for me every Sunday for the past 2 years. They even send me notes of encouragement, which always make me smile and be thankful for parents who are teaching their kids about the Bible and Jesus Christ. Here are some recent notes from that group of young prayer warriors.

Dear Miss Lori,                                                Are you doing well? We are praying for you. I hope you get your lungs.                              God Bless You.                                              Your Friend, Caroline R.

Dear Lori Morris-Hughes,           I hope you get new lungs.          Your Friend, Alex A.

Ms. Lori,                                                                    I just want you to know that I’m praying for   you and hope you get better. I really do!    From Christine B.

Dear Ms. Lori,                                                 I hope you are feeling better. We are praying for you and hope your lungs come soon.                         Love Lacey R.

Dear Ms. Lorie,                                                    Good luck on your operation. Jesus loves you and is keeping you in His watch.                                                                           Jayme

Hello Ms. Lori,                                                    We are all hopeful that you will get your lungs soon and that your operation goes well. I will pray for you. I hope you have a good day.  Love Hannah

Tomorrow is a big day here in the US as the people vote for the leader of this great Nation. We have been in much prayer, asking the Lord for His will to be done, knowing that God will have the right man in the office of the President, for another prayerful and faith based 4 year term. Amen W!

Saturday November 6, 2004

My mother died today.

Dorothy Morris

January 4, 1927 -November 6, 2004

Gone to be with Jesus. Loving wife of the late Leonard Alexander Morris, beloved mother of Noreen, Brenda, Nancy, Dolly, Vicki and Lori. She will be sadly missed by her sons-in-laws, grandchildren, great-grandchild and all her family and friends.

Mrs. Morris’ family will receive friends at the Jerrett Funeral Home, North York Chapel, on Wednesday from 2-4 p.m. and 7-9 p.m. Funeral service in the chapel on Thursday November 11, 2004 at 11 a.m. Interment in Carrville United Cemetery. As expressions of sympathy, donations to the Alzheimer Society or to Gideons Bibles would be appreciated by the family.

Wednesday November 10, 2004

Hello Dear Friends,

My plans were to be in Toronto this day, to gather with family as we celebrate the wonderful life my mother experienced, but instead, Brian and I are in Virginia and I am contemplating the possibility of being readmitted to the hospital again. The plans were all in place to fly to Toronto, but I am not doing well. At my request, I was discharged from the hospital on Monday so Brian and I could fly to Toronto and arrangements had all been taken care of to continue with both IV antibiotics and oxygen while there. All was set to go---except me. I could not look into my own heart and be confident that I would be well and stay well. Even just a smidgen of doubt was enough for me to heed Dr. Randy’s words of wisdom...”If you don’t feel well...ABORT. Don’t go!” The fact that he even agreed to allow me to travel was something I could not brush off lightly, so for my part, I too, had to do what was best for me. To rest, heal, and know that in my heart of hearts, that’s what my mother would have wanted. For me, this was a chance to show some maturity in that I don’t just do things to spite my doctors and ignore their advice. I actually listened to Dr. Randy, let it get through my thick skull, and did what was best for me. So now where is the pat on the back?

I have been a “space cadet” all day, feeling kinda warped and dorky, which can be explained as being hypoxic and trying to run on all eight cylinders with only half a tank of gas on reserve. My thoughts get scattered when my oxygen level desaturates and my carbon dioxide level rises, but not scary enough that I’d do anything stupid. I just need to sleep. Nitrogen narcosis. A good, long, uninterrupted sleep. Like 12 hours without getting up to pee or answer the phone.

I cried over what this meant to me, that once again, CF won this battle, that CF got to decide whether I went to Toronto or not, that CF was pulling the strings, that CF was running the show....but then God spoke to my heart and soothed me with His tender words of mercy. My mother (and indeed ALL my sisters) would absolutely not want me to come to Toronto feeling as I do, knowing I could be worse off as a result. So in effect, while CF was the excuse I used to not go home to Toronto, CF also cushioned me from feeling that I had no valid reason for missing the funeral. Am I warped or what?

Last night, as I was drifting off to sleep, I thought about the awesome eternity my mom and dad are now sharing. These sad times are just temporary, and for the born again Christian, life after life is gonna be awesome!

So for now, I am quietly resting at home, still in my pjs, and hoping I can rest my body and feel less tired. I am edematous in my hands and face and seem to be wafting slowly downward in a progressive spiral into respiratory failure, again. My Prednisone dose is 30 mg per day and I feel like a huge fat blimpo with unsatiable cravings for sweets. Even despite 40 mg of oral Lasix, I still haven’t peed out anything significant. Oh bliss.....come rescue me. But it does get better. At least I am alive and breathing. More later, promise.

The Next Day...

I slept well last night. The pre-med cocktail I take every 6 hours (so I don’t get nauseated from the IV antibiotic) kicked me into a deep sleep, devoid of spasmodic coughing and rhonchorus rales. When I awoke, Puddy cat was laying on my chest, purring her usual nod of affection towards me. I pondered how my family made out last night at the funeral home, hosting and greeting visitors who came to share how my mom has been an influence in their lives. I imagined the ladies talking about “Tea Time” and about mommies scones, enjoying fine Canadian tea and English crumpets. About how my mother never did anything without first praying, and then waiting for God to show her the answer. How so faithfully, she trusted God for everything, and how day after day, her needs were always met, by strangers and by friends. I wished I were there last night, to hear from others, how my mother counted her blessings and always knew the Lord would provide. I wish I had the faith my mother had, because all her needs were met when she entrusted them to God. When there are times I wonder if I would have ever been a good mother at all, I simply let the thought vanish and say I could never be as motherly, tender and loving as my mother was to me. I would fall far too short, so it is a venture I did not dare try. It is a full time job to be a mom, and I saw too many weaknesses in myself to ever attempt to pass at best marginally. So....it is with awe that I can look to my own mother and see how God used her daily to further His work. She not only chose me (by adoption), but also loved me as her very own. I will always and forever be her little girl. Amen for Godly mothers. Amen for Dorothy Morris.

Lori: What's the plan girlie? Going back to SNGH? Sticking it out another day with the furries? Lying on the bed thinking of all the wonderful times you had growing up in the Morris home? Bask in that my friend. Remember all the pumpkin pies, all the love, the understanding and the warm and caring advice. Remember the hugs and the kisses and the love. Remember it was the Morris' nurturing home that allowed you to become the absolutely fantastic soul you are today. Remember that they encouraged all those deep Christian beliefs you hold so dear.               With love, dp           Wasn’t that a nice email from my friend? It hit the spot exactly. Thanks DP! Wednesday November 24, 2004 It’s been 2 weeks since I last updated this journal and another CF tune up consumed my time. Same old, same old. Admitted from the ER and put on the ventilator, I am now home and slowly getting back into my routine. My sputum grew out Methicillin Sensitive Staph Aureus and Burkholderia cepacia. If one can be pleased with MSSA, I was because rather than a resistant strain of Staph, this time I am sensitive to some antibiotics. I am infusing Zosyn every 6 hours because there is a national shortage of Meropenum (which was the first choice of the ID doctor) and also taking oral Cipro. Prednisone is at 30 mg a day until I see Dr. AJQ next week for follow up. My furries (cats) all missed me tremendously as evidenced by their velcro attachment to me since last night, plus Simon boy is very vocal about being neglected by me. He is raising his voice every time he sees me to cry his displeasure at being lost in the loop. Unfortunately, the house in Chapel Hill forbids pets, so sadly, no furries will accompany me. My nurse Melissa came over today to change out my Medi-port lines and I am set for another week. She has to come back Monday to draw blood for labs. I have called UNC to ask for their advice about coming down for CF management and Melissa and I will do a road trip when they set up an appointment for me. Tomorrow is American Thanksgiving and my mother-in-law has graciously offered to host dinner at her house so as to free me up from any cooking and slaving in the kitchen. I did buy a spiral sliced Virginia ham for the day and I will also host a Canadian Hot Chocolate social at her house. We grew up with “real” Canadian hot chocolate--not ever made with water, not ever instant Carnation type stuff, with real marshmallows and always with homo milk. So I’ll take my gallon of homo milk, real marshmallows (made square by a company in Boston) and some nutmeg, and indulge in a social sipping passion in the afternoon. My father made the best hot chocolate, always gently coddling the boiling milk, and topping it off just right. Never could I ever drink watered down hot chocolate. It has to be just right, Canadian, and made with milk to be appreciated. I have much to be thankful for and will thank Dr. Randy Garnett again for being a good doctor. To Brian, Shannon, Lori and Donna for loving me, and for my sisters who understand my disease and allow me to be me. Ultimate thanks goes to God for loving me beyond any love imaginable and for carrying me when I falter. Happy Thanksgiving! Saturday December 11, 2004 Yesterday was a very difficult day for me. Melissa and I went to a transplant clinic appointment at UNC Chapel Hill and met with both Dr. Egan (transplant surgeon) and Becky, my transplant coordinator. Dr. Egan very clearly said that my blood work has shown multiple antibodies such that transplant might not be an option. How did I get these antibodies? From my 12 blood transfusions over the last 5 years at Norfolk General Hospital. Transfusions were given during episodes of hemoptysis and from that donor blood, I contracted antibodies. This past August, Norfolk General Hospital sent me a letter and a wallet card, stating they had just identified my two antibodies (anti Kell and anti E) and that if I should ever need blood in the future, to let my caregivers know I have these antibodies because matching me up to a donor would take more time and be a bit more difficult. That was all. Nothing more was said about it. So I sent a copy of the card and letter to my UNC Lung transplant coordinator for her files. UNC was very concerned about this. They investigated and called the Norfolk General Transfusion Lab to get more info. So when I went down Thursday with Melissa they took 9 tubes of blood for all these immunology lab tests. Friday I met with Dr. Egan who tells me that the UNC lab has detected 12 antibodies and that the PRA (Panel Reactive Assay) was so whopping off the scale they are very, very concerned. He asked if I would let them draw more blood to re run the tests again and I said YES. Dr. Egan explained if indeed I have these troublesome antibodies, it could exclude me from transplant. Period. No lungs. A tear welled up in my eye and ran down my face. Could this be the end of the line for me? For some stupid donor antibodies? Becky then further discussed the issue with Melissa and I. She said that one of my previously identified antibodies was fairly minor, but that the other one was potentially fatal in the setting of newly transplanted lungs. She said if indeed I only have 2 antibodies, then they will discuss if doing plasmapheresis is an option for me. If indeed I have more antibodies, then to transplant me would most likely result in a fatal outcome. Dr. Egan said ethically he could not transplant me knowing I would not make it off the table due to documented antibodies. He also said if he were to put the new lungs inside me, they would turn black immediately and I would suffer from a hyper acute reperfusion injury and die on the OR table. So we will patiently wait for a call on Monday from Becky to tell me what the lab results show and go from there. Plasmapheresis is when they hook you up to a machine like a dialysis machine, where they wash and clean your blood, take off the bad antibodies, and give you back your blood now cleaned up. I came home, hugged Brian and cried. We prayed together for the Lord’s will to be done and if transplant was not going to be an option, to give me the strength and courage to live as best I could. Dr. Egan also called Dr. Randy Garnett for his input on things and mentioned the antibody concern. Becky said that they prefer I get my CF care from UNC and that I should still consider moving down January 1st anyhow, to be in the vicinity of UNC and to be admitted there for CF admissions. I have an appointment at their CF clinic on January 6th. If I get sick in the meanwhile, it is up to me to decide whether I can make the 4 hour drive to UNC for an admission or whether it is too urgent and I’d best go to Norfolk General. I’m not sure what to do as I am loyal to Randy Garnett for his excellent bedside manner and care. Yet...CF adults need specialized, directed CF care and some people at Norfolk General wish I would die and go away. They might just get their wish. Melissa and I did go visit the new house I have leased for January 1st for the year (in anticipation of moving for transplant). It will be fully furnished for the move in date and what else can I do except cry and leave it all with the Lord? He has brought Brian and I this far, and I have trusted Him for His grace, so now it’s just a few more days of waiting until I hear from UNC to let me know their decision. So dear readers....please make this a prayer of your heart to let me graciously accept whatever decision is made. I am your humble friend....Love Lori. Sunday December 12, 2004 I am waiting for the Monday afternoon phone call from UNC. In my mind, I am planning for the worse situation: no transplant--but praying for a miracle that maybe I’ll have a chance at this. It puzzles me to think about how the heck Norfolk General intended to transplant me with all these antibodies. But then again, maybe they knew all along they would not really go through with it (transplant). The trach certainly got me thrown off their list as did having Burkholderia cepacia, yet they strung me along for nearly 2 years with the hope and expectation of new lungs. How come they never ever, even once, mentioned these antibodies to me and never raised any red flags, yet UNC jumped in with 2 feet into the mess and said it might be the end of the road for me? I am more quizzical than angered, as I can’t be mad at Dr. Randy Garnett for very long at all. He’s too nice a guy for me to waste valuable brain cells being upset with him. UNC also asked Dr. Garnett why they had not referred me to an adult CF center earlier? The reply was along the lines of “...they were too fond of me...” So I am leaving it all in God’s very capable hands and just waiting on Him. We have trusted God to bring us this far and whatever decision is right for my life, will happen. Frankly, I’m surprised it has gone this well, considering at first, I was the one who declined to consider transplant, now isn’t it ironic that something I now want so badly, might be taken away from me? Yet at the same time, if a transplant is denied me, I’ll sit here and weep. What does this mean to me? Am I doomed to a recurring life of repeated bouts of respiratory failure? On and off the vent constantly? Is that living life? When is it too much for me to bear? Do I DNR (Do Not Resuscitate) myself so I can say “no more vent” for me? Maybe that’s God’s will for my life, eh? Brian and I all know CF friends who have said “...no more aggressive care...” We know CF friends who have said they are too tired to fight on and they just want to rest. I have previously told Dr. Randy Garnett that if it comes to that, I want to be gorked out on the maximum IV cocktail to hasten dying (morphine and everything else available) to have a good death and to let me go and be with Jesus. I am ready to go to church now and spend my Sunday morning in the house of the Lord. I’ll go to Sunday School then the main service, to praise the Lord and thank Him for all my blessings. I’m going to meet with the sixth graders who are in Rod Fombells class to thank them for being prayer warriors for me and to update them on what is happening. I also have my “Lungs for Lori” t-shirts to give each one of them with the promise that when they wear it, they will remember to pray for me. I explained about CF, organ donation, and antibodies, and they asked a whole bunch of great questions. I was so pleased Rod asked me to speak with his class. Thank you Rod. This afternoon, Brian and I have a Christmas dinner to go to at the neighbors house then our church is having their Christmas musical at 5 PM, which we will be at. Ok...time to go. I finish the IV Zosyn and Cipro on Tuesday. Yeah!! Will write more tomorrow when I hear from UNC. Please pray for the outcome of their decision, whatever it may be. They don’t like giving bad news either, but at least they will take on my CF care down there. Love Lori Monday December 12, 2004 Still no news from UNC. Maybe this is favorable. Perhaps the lab needed more time to get results or maybe Dr. Egan was in the OR all day doing a lung transplant and my transplant coordinator Becky, could not consult with him. Maybe they are deciding what to do with me? Maybe they are reanalyzing the results and asking for opinions. My life is on the line here, folks, so this is serious and I know whatever answer they deliver to me, will be after much careful thought and discussion. The wait continues. Hopefully Tuesday will bring the phone call that I am (anxiously)waiting for. I called my office today and as they had already heard the news, were sad for me. So I said...”Let’s do lunch Tuesday”, which is what I have planned. Maybe I am in big time denial, but I went ahead and made plans for all the utilities to be hooked up at my new home in Chapel Hill for January 1st. Since I have an appointment at the UNC CF clinic January 6th, I’ll go down a day early and stay at my new home-away-from-home, then decide whether to stay for a night or two. We are deciding about my ongoing pulmonary care and considering transferring my care from Norfolk General to the UNC folks for CF management. I would be away from everyone with no visitors from home to come cheer me up, and Brian could only come on weekends. Plus I like Dr. Randy Garnett and leaving his care is difficult. They have 400 patients with CF at UNC, of which 200 are adults. Of those, 40 have Burkholderia cepacia, so they know their stuff! That’s a whopping difference from where I am now where there are maybe 3 people with CF at the very most and none with cepacia. Anyhow, if I say more, they will censor me. The wait continues.... Tuesday December 14, 2004 Still no news. Perhaps it might mean they are trying to brain storm for the right treatment that will make me a better transplant candidate and minimize the antibodies. The Bible says...”Be anxious for nothing...” But I can feel the palpable uneasiness as I wait for their verdict. Lord, calm my heart and let me not be fearful. Whatever is going to happen is your will, so help me with my faith to trust you more. Today, a friend emailed me her thoughts: Lori, God can see the whole picture from above.....we can only see right in front of us and around us.......we can not look down and see the whole life He sees... You know if the answer is no new lungs, then maybe you would have died on the table.....(that sounds sick I know.....not meant to be...but many have died trying to get lungs) and this way, you do live longer.....who knows.......we can only guess.....what if transplant was way worse than CF lungs??....and you wish you hadn't had it.....I mean we do not know which is going to live longer...to live like you are now, in end stage respiratory failure or if you got the transplant....there is no way to know......it is so hard.....we have to lean on The Lord because there is no other that has those big shoulders of promise..... She has CF and is 45 years old, and lives in Norfolk, VA. We share some of the same struggles and she understands. Now....just waiting for the phone to ring... Wednesday December 15, 2004 I heard from my transplant coordinator today and here is her email. Hi Lori....You have a large number of positive antibodies. Most of them would not be significant in a transplant. Our transfusion lab is corresponding with Norfolk General to better quantify some of the more obscure antibodies and to review your transfusion records. Your sputum is growing staph and gram neg rods. Your CF genotype is not back yet. I promise to correspond with more info as soon as I get it. It’s still somewhat positive and at least she has not straight out said I’m dumped from transplant, so I remain hopeful. The sputum culture was taken from a tracheal aspirate, meaning they went down my trach and sucked it right out of my lungs. Nice friends I have growing down there. I feel as though a huge emotional burden has been lifted off my shoulders, at least for now. The news could still come that I am not going to be transplanted, but for now, for today, I have hope. Please keep me in your prayers, regardless of what decision is arrived at.  With Love, Lori. Monday December 20, 2004 No other news from UNC yet, so I continue to wait patiently. I am coughing more and my trach is irritated and bleeding from coughing so much. All I can do is add more humidity to my night time oxygen to saturate the dry area better. I’ve asked UNC to my doctor my latest sputum results so that we can get on top of it with antibiotics. I will have to increase the Prednisone to buy me some time as I do not want to be sick over Christmas. Last year I was in the hospital for Christmas and it was an emotional low point for me. I am not going to jeopardize my life and ignore escalating symptoms, just to die at home, so I’ll contact someone to start me on antibiotics again. Will deal with this and move on. All my shopping is done and I can relax these next few days at home and try to feel better. I will cook a turkey on Christmas Day, with all the fixings! I love Yorkshire Puddings with gravy (it’s a British thing...) and Brussel Sprouts, Cornbread stuffing, green beans, and pumpkin pie with French Vanilla Cool Whip for dessert. All I wanted for Christmas were pink, healthy lungs. Few other gifts could top that off, and now even that is in jeopardy. I remain optimistic that the HLA antibodies will not be an absolute exclusion to proceed and that UNC will find a solution which will lead to transplant. If they take that away from me, then my hope is gone. There is little reason to go on fighting to breathe just to be vented over and over again and being adversarial to Dr. Randy Garnett... when all he wants for me is a better quality of life. Hey...it’s Christmas! There is NO better gift than the gift of Baby Jesus. Tuesday December 21, 2004 The verdict is in: No Transplant. That’s it. I’m too emotional to elaborate right now except to say I had a very long discussion with my transplant coordinator and the antibodies I have acquired through blood transfusions, makes transplant too risky to proceed. I would die on the operating table from hyperacute reperfusion injury. It’s as good as saying ”...if we transplant you on Friday, that would be the day you die.”  I have cried for hours over this news and continue to seek God’s wisdom in this decision, and ask for His grace to give me the courage to understand what this means for Brian and I. My friends Donna and Shannon, came over to sit with me and let me cry. They understood. When Brian heard, he left work immediately and came home. We cried together. From the information I have received from UNC, here is my attempt to make sense of the antibodies I have and what they might mean. Lori’s Antibody Phenotype  Antibody Comment Blood Group System C Pos            clinically significant Rh e Pos            clinically significant Rh k Pos            clinically significant Kell   (anti-k) JKa Pos       clinically significant Kidd (anti-Jka ) JKb Pos         clinically significant Kidd (anti-Jkb ) FYb Pos       clinically significant Duffy (anti-Fyb)       M  Pos                       clinically insignificant MNSs S  Pos                      clinically insignificant MNSs LEa Pos                  clinically insignificant Lewis P1 Pos                      clinically insignificant P Antibody ID #1 = ANTI-E deadly to transplant me   Antibody ID #2=  ANTI-s deadly to transplant me   I don’t understand it all--yet. UNC sent me a medic alert card in case I ever need a transfusion, as it will take longer to find a compatible unit of blood with these antibodies. Still, we thank the Lord for bringing me up to this day, and will celebrate His birth at a candlelight service tonight at church. It’s one day at a time for me. Enjoy today and pray for today’s blessings. Happy Birthday, Jesus.   Thursday December 30, 2004 It’s been nine days since the news of “No Lungs for Lori”, and I think I am processing the impact of it appropriately. I am thinking how my hope of being trach free won’t happen. Dr. Randy Garnett is of the opinion I can’t be decanulated while UNC holds some hope I can. I would love to not be trached. It was something that was supposed to be temporary---yeah, right, 3 years temporary so far! Who can I blame for that? Nobody. Things just happened that way. It too, had to be God’s will, as traching me was the only way to save my life, way back in July 2002. But why has it been so difficult for me to get this trach out? Norfolk says floppy posterior wall collapse, but UNC says bunkum, don’t believe it. UNC says everybody’s trachea collapses a bit when you breathe in, so it’s normal. Who to believe? Dr. Randy Garnett has never steered me the wrong way with his vast knowledge, so I trust him, but in doing so, am I robbing UNC of a chance to fix my trach? Brian and I will journey down to Chapel Hill on New Years Day, to move a few things into my new (temporary) home. I’ll stay for the week, while Brian returns home to Virginia. Lori and Jason Jernigan are coming to join me for a night as Lori has to be at Duke for her post-lung transplant appointment, and I am just a few miles from Duke. I have a CF clinic appointment at UNC on January 6th. Today the house furnishing company in Raleigh called to say the utilities were not yet turned on. I had arranged all that to start 2 days ago--yet the idiots at the various utilities did not do as I asked, so tomorrow some people will have to scramble to get things done and ready for our arrival on Saturday. Then I received another call that there is a major gas leak in the main line to the house, so until that get’s fixed, no lighting the fireplace (or even candles) or Lori & Brian go Ka-BoOm! Plus add liquid oxygen into the equation and it’s blowing us up to smithereens. Not a good thing. Then another call informed me that during the Christmas Day winter freeze in North Carolina, a water main in the crawl space froze and when they ran water to the house, the crawlspace flooded! So when we get there Saturday, it might not be fixed yet...meaning the toilets won’t flush and no showers. OK God...I need you to work overtime here, to get these things fixed so I can move in without having an unplanned accidental death this weekend. I am upbeat about meeting this new CF team at UNC but wish Brian could be here with me to hear what they have to suggest. I have praise news too~my trach bleeding resolved completely by increasing the inspired humidity while I sleep so I am not dried out. I am dreading my next tune up and wishing it wouldn’t come anytime soon. Brian and I continue to see a therapist for issues relating to chronic illness and coping, and now we have to change the focus from waiting for lungs, to not getting lungs, to how best to make use of my time and feel in control of my life. Now I can call the shots and not have everything I do hanging over my head with the threat of “...if you do so and so, you are off the transplant list...” “Three strikes you’re out” was the childish threat that was always uttered when I chose a different (and sometimes more mature) treatment approach to my care. I just got off the phone after a call from a long time family friend named Audrey. It was wonderful for Audrey to call. We last hugged in Toronto when I went home in November for Kevin’s funeral, and I drove her home after the visitation. She spoke with my sister last night and decided to call her “Little Lori” and see how I was coping. Thank you Audrey for caring and phoning. Well, I’ll close here until next year. Please continue your prayers for my health in 2005 and for Brian and I to draw ever closer to the Lord and to each other, trusting God for everything. With much Love, Lori.