The List!

OrganI made it! I’m on the lung transplant list! Well, almost. I will officially go on the list next week after I’ve met with the surgeon and signed the paperwork — that’s when the real waiting begins. In the meantime, I’m busy trying to get everything taken care of so I will be ready when I get “the call.”  And I am hopeful that my wait will not be a long one.

After a full evaluation at Barnes earlier this week, I’ve been assigned a Lung Allocation Score (LAS) of 62. The score is based on a 100-point scale and most people on the list are clustered in the 30s and 40s. A score of 50 is the 90th percentile. My score places me about the 93rd percentile, and that means that next week when I am officially listed, I will be #1 on the Barnes list.

That’s incredibly exciting, however it’s tempered a bit by some pretty serious limiting factors on my side. I’m relatively short (5’4″), so my donor will need to be my size or smaller. And I have HLA antibodies, which I developed during my pregnancies. HLA antigens are part of the immune system and in my case, this specific antigen occurs in 78% of the population. So, 78% of all donors are not a match for me — instant rejection. Among the 22% of donors that are available, we still have to match for size, blood type, etc.  To deal with the size problem, there’s a strong chance I will get only one lung. A single lung transplant would allow the surgeon to use a larger lung than would be possible if he was trying to fit two lungs into my chest. If I do get a single lung transplant, they would leave the less-diseased lung (my left) in as a “place holder” to keep my chest cavity from collapsing.

All of this leads to the essential and yet unanswerable question: how long? Masina, my transplant coordinator gave me the best answer she could — I might get the call the day after I’m listed, or it could take several years to find a match. Of course, I don’t have several years, so I will continue to pray that my match comes through while I am still healthy enough to receive it. I’ve been thinking in the abstract about “the list” for two and half years.  Now that it’s a reality, I am feeling overwhelmed for the first time. A lot excited, somewhat scared, and a nagging sense of guilt that my second chance will come at the loss of another’s life. So many things to sort out. Luckily, the transplant program includes social workers and spiritual counselors to help me work through it all.

Throughout this whole journey, I’ve felt strongly that there is a plan for me.  The first part was to make me a better human being, a better mom, wife, daughter, sister, friend. I think I’ve grown immensely as my priorities have shifted, fallen away and emerged anew to reveal the simple truth about what is really important in life (love, relationships, the things that bring me joy).

The second part of that plan — getting me to this point — has progressed quickly. Until I saw my LAS score, I just didn’t realize (or didn’t accept) how sick I am. I’ve been dancing on the knife edge, but no matter what hurdle appeared before me, somehow I’ve maintained equilibrium. In fact, every hurdle has actually pushed me forward.  My broken ankle helped to bust through a weight plateau and I’ve dropped 23 pounds since September.  Even my evaluation at Barnes, dramatic as it was, turned out for the best.  The 4-day eval started off on Monday this week with blood tests, a chest xray and an EKG. All went well until the EKG.  The tech ran a strip, left the room, came back to run another strip, left the room, then came back to run a third strip. She kept asking how I felt — I was fine.  The tiny room suddenly filled with people and someone was shoving baby aspirin at me. The EKG said I was having a heart attack. I knew I wasn’t, but we went to the ER anyway. While everyone in the ER agreed I wasn’t having a heart attack, they admitted me for observation and to do a heart cath the following day. The cath went smoothly and my arteries are beautiful. Thank God for statins and a timely change in diet!

Since I was already there, it made sense to simply complete my work-up as an in patient. Over the course of two days, they finished all of the testing and delivered my transplant patient handbook to me before I left the hospital. The blessing here? Four days of outpatient testing, running from floor to floor, sitting in crowded waiting rooms and driving back and forth in frigid weather would have done me in. As it was, I got to breathe that lovely high pressure 100% pure hospital oxygen and be escorted from test to test with a nurse in tow (because of my high liter flow, a nurse was with me all times).

Blessings have surrounded me throughout my journey, and I know they will continue. I have faith that when the time is right, everything will happen just as it should. Until then, I will wait patiently and prayerfully (okay, we’ll see how long the patience lasts!).  As I get into the routine of being on “the list”, I will post about my experiences.

In the meantime, for those of you who hope to one day get on the list, here are a few things to think about:

  1. Work hard to get to your goal weight as quickly as you can. My weight is what held me back from being listed earlier.
  2. Get active. Start pulmonary rehab, or at the very least, start walking.  Fitness and strength will be essential to get you through the transplant and recovery.
  3. Stay positive. Your attitude is paramount. Celebrate every victory, no matter how small. Focus on what you can do rather than what you can no longer do.
  4. Surround yourself with a team as committed as you are. If your doctors don’t know anything about PF, find ones who do. Join support groups to talk with people who are in your situation and can answer your questions (check out the Resources page for links). Ask your family and friends to help.
  5. Have faith. You can control your own behavior, thoughts and attitude, but some things are simply beyond us. My faith has given me the patience to accept and deal with these unknowns.
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One Step Closer

I just walked in the door from my day-long appointment with the transplant team at Barnes-Jewish, and I couldn’t be happier!  I was down another 6 pounds, which means I only have 17 pounds left to lose.  Once I hit my goal weight, they will do a heart cath to make sure my heart is in good shape. If the cath clears me, then it’s just a matter of final blood tests and I will be on the list!

At the rate I’m losing now, 17 pounds should take 4 to 4-1/2 months to lose.  The doc figured my current condition would put me on the top half of the list, where the average wait time is 150 – 160 days. So, it’s possible this time next year …  okay, I’m getting ahead of myself. There’s still a lot of road to walk before I get “the call.”  But today made me more confident than ever that this will happen

The next big hurdle is making it through the holidays while continuing to lose weight. Our family tradition includes making cookies, candy and pizzelles,  and I’ve always volunteered to dispose (snarf) anything not quite up to giftable standards. This year I am keeping an image firmly planted in my mind — an old-fashioned balance scale with a pair of pink shiny lungs on one side and a holiday treat on the other. That’s the test everything going in my mouth has to pass.

Thanksgiving is in two days and you can bet I will be counting many blessings this year!