To List or Not To List

Jody and I are facing what is proving to be one of the most difficult decision we’ve had to make thus far in our married life, which is whether or not to make him “active” on the transplant list.  If you’ve been following Jody’s journey you know that Jody needs a double lung transplant, this is indisputable!  But if you’ve been following my blog you also know that lung transplants are by no means a guarantee for a long-lasting life, in fact, statistics prove it’s quite the opposite.  Balancing the need for new lungs to live a quality life, verses a life cut short by lungs transplanted too soon is delicate.

We were first approached with the idea of transplant for Jody back in September (2013).  You might remember this emotional post.  After undergoing extensive transplant testing, Jody was seen for the first time in the transplant clinic in December (2013) where he was kindly told that despite having 30% lung function, and requiring Oxygen to breathe, he was too “healthy” for transplant at that time.  Again the doctor pointed out those scary statistics; that transplanted lungs only last an average of five years and only 50% of patients even live five years post transplant.

Since that time Jody has been followed closely by both the Cystic Fibrosis and transplant clinics.  It seems at every appointment those statistics are repeated to us over and over (as if, even after hearing them spoken only once, we could ever forget them).  Most recently we were told that 20% of patients don’t live through the first year post lung transplant.  This may sound like a low number if it’s the chance of snow being predicted, but it sounds like a high number when it’s referring to someones life (especially someone you love).  It really is hard to stay positive and hold onto hope for what sounds so hopeless (and with medical “proof” to justify the hopelessness).  Yet I understand the doctors need us to comprehend the seriousness of all this and to be able to make an informed decision, and I appreciate their honesty.

Jody and I feel as if we are on an emotional roller coaster.  First, we struggled to accept the need for transplant, and when we finally did, we were told it was best to wait.  Then we were forced to accept this less-than-ideal quality of life, so different from the life we’ve always known.  In addition, we’ve been approached with conflicting opinions from Jody’s doctors, all of whom we trust and respect.

Last week, when Jody was in the hospital the CF doctor (who also works on the transplant side of things), again suggested we hold off on activating Jody on the list, arguing that he didn’t want to start “the clock” prematurely, but acknowledging that Jody’s quality of life is not ideal.  However, he also mentioned that two of his colleagues (CF doctors as well) disagreed with him, believing that now was/is the time to list.  Ultimately, we agreed to wait, hoping to buy more time before the transplant becomes absolutely necessary.

Yesterday Jody had a post hospitalization follow-up appointment in the CF clinic.  The majority of the time at this appointment was dedicated to the question of whether or not to make Jody active on the list (we weren’t anticipating this being the focus of the visit).  The physician essentially told us that the team is in agreement that now is the time.  Yet it was a just a week ago that we were told the opposite (and it doesn’t seem like much has changed between then and now).  So how do we know when it really is “the time?”  According to the doctor today, it’s when living as you’ve been living is no longer worth it.  When ones quality of life has become basically, unlivable.  Naturally when talking about my husband and the father of my young children I want to jump up and scream, “What are you talking about?  How can life ever be ‘unlivable’ when you’ve got kids who desperately need a Daddy?”  Instead I sit there quietly and calmly, with a few tears in my eyes, because I know that I’m not the one living the unlivable life: Jody is!  My love for him needs to be greater than my fear of losing him.  Only Jody can know when he’s had enough; when the only option left for him is transplant, potentially shortened life and all.  It is true that transplanted lungs could give Jody a new lease on life, but in making this decision we need to be prepared for the worst and hope for the best.

And so, as I mentioned in the beginning, it seems we are facing one of the toughest decisions of our married life.  It feels like an end-of-life decision I’d rather not contemplate (unless maybe Jody were 85 years old and had lived a long, enjoyable life).  I fear making the wrong decision.  What happens if we choose to wait and Jody becomes critically ill, making it more difficult for him to recover from this major surgery?  What happens if we choose to list and he doesn’t survive the surgery or first year?  It’s a gamble and right now we have no answers.

We could use your prayers that God would guide us in this decision, and make His will clearly known.  We also pray that God would bring the doctors to complete agreement with one another.  Finally, pray for peace when the decision is made.  I know the enemy wants nothing more than to confuse us and to take away the fragile hope to which we cling.  We are under no pressure to make a quick decision and as always will fill you in when we do.  Until then, breathe easy, and appreciate those hard-working lungs of yours!