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.

26 thoughts on “The List!

  1. I stumbled on your blog while researching BJH lung transplants… We are taking my Mom to Barnes in late Feb for the evaluation. I am so hopeful for you and her!

  2. Congrats!!! Such wonderful news!! I had my double lung transplant on May 24, 2010. I thought I had a lot of issues against me too! First of I’m small too, 5′ 3″ and that’s on a good day so I needed lungs from a small person as well. That worried me because there was never any question that I would only get one lung, it was to be 2 or none because the disease would attack the new lung as well. Secondly, only 4% of the world population have the same blood type as me. Third, I had some sort of anti body like you that would be harder to match. I was placed on the list on March 15 (3 days before my 44 birthday) 2010 at the Cleveland Clinic. I was never told my allocation score (if I was I have no idea, I think I will check to see if it’s on my official letter from UNOS, Hmm….) but I was #1 at the Cleveland Clinic and the only person in the North East part of the country with AB+ blood type waiting for lungs. I received “The Call” May 24th, 40 days after I was listed!! My new lungs were slightly big for me and the center doesn’t “trim” lungs to fit so they left my chest open for 5 days in order for swelling to go down and for the lungs to take their proper place in my chest. So anyway the things that I thought would make my wait a long one actually made it very short. I hope the same for you! Your attitude is the same as mine was and still is, I’m meant for greater things, I know it, although I’ve yet to figure it out! LOL Maybe it’s simply to spread the word to as many people as I can about Organ Donation. I wish you well and really enjoyed your blog!! God Speed

    • Monica,

      Thank you so very much for your message! This is exactly what I needed to hear right now! I just came from my meeting with the surgeon and signed the releases. I hope to be on the list by tomorrow. Your story is probably the most encouraging thing I’ve heard in a long time. One more reminder to trust in God and His plan. I do! Blessings to you

      • I am doing okay, thanks. My PF has historically been slow-acting, so I am on a very slow decline of function, about 1% per year over the past 20 years. So am staying fairly stable at the moment at around 30% diffusion capacity. I am currently trying to increase my stamina and decrease my weight through diet and exercise. Not an easy task! LOL

        I am so very happy for you that you made it on the list and I wish you all the best. I have kept track of some people who have gone through the transplant process and they are very positive about it saying it was all worth it to be able to breathe again! Blessings and peace to you!

      • I’m glad to hear you are hanging in there. You can lose the weight — I know you can! Just take it one step at a time. Small changes add up to big results over time.

        And thank you for the encouragement. Lots of emotions flying around right now! All the best to you!

  3. I had no idea about your condition until I read this post, which I saw on FB. Thank goodness for FB. Reading your words brought tears to my eyes, Lori, because of who you are–a courageous, wise woman, facing life’s challenges with amazing grace. The clarity and simplicity of your words says it all.

    So glad to hear that you have reached a big milestone in your journey. And that you have a fabulous community to support you. Sending you love and light as you walk your path.

    • FB has been a Godsend in a lot of ways. I’ve been able to connect with some amazingly strong and wise people in the PF community. And it’s been a true joy reconnecting with old friends from throughout my life. Thank you for warmth and encouragement!

  4. Yea! Number one on the hospital’s list. Your faith has brought you so far, Lori. I believe that you WILL have a new lung. In addition, I see so many ways that you have become a new person. You’re a true fighter, you are filled with gobs of positive thinking in spite of balancing on a knife’s edge. God has a wonderful plan for your life. I can’t wait to see all the great things he has planned for you. Know that you are truly loved by God and some many friends like all of us.

  5. So happy to hear that you are on the list! What can seem impossible to us (the perfect match) is not impossible for God. His plan, His timing for you and your donor. Praying for you!
    Your 5 points listed are really applicable for all of us! Another inspirational post!

  6. Way to go Lori. I am praying that you will have a short wait on the list and will soon be enjoying fresh air without nasal cannulas.

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