Back on the Roller Coaster Again

This post marks the end of another hiatus.  There were many reasons for not having the words to bring clarity to our recent events, but the time seemed right to begin again.  And because a lot can happen in a years’ time, I will have to backtrack a little.  I do appreciate your patience as I briefly go back in time.

It is funny how certain things will remind you of something, whether happy or sad, and the way you are reminded is so strange or out of the norm that you just know it was meant to weasel its way back into your consciousness.  For instance, last week I received an email survey to evaluate our “recent” visit to UAB Hospital.  In actuality, our visit was over a year ago.  Then today a woman approached my husband in a store and while pointing to his oxygen tank, asked if he had ever gone to UAB to see if they could help him.  Two separate events, two reminders of a most difficult time.

We began 2016 with preparations to have my husband evaluated for a heart/lung transplant at University of Alabama Hospital at Birmingham (UAB).  We arrived with great hope and a little trepidation…our first ride on the transplant roller coaster hadn’t gone so well with Oschner in New Orleans because they don’t do multiple organ transplants.  However after this first disappointing experience, his supportive doctors were quick to regroup and request to have him evaluated at UAB.

So in January of 2016 we arrived at UAB with our suitcases, medications and two large Manila envelopes full of paperwork.  And lots of hope and prayers.  The next several days would be spent getting labs, an echo, ekg, pulmonary function tests and appointments with the cardiac and pulmonary transplant doctors.  At the end of our stay, we would know if he had a shot at transplant.  I knew that there would eventually be classes for both of us to attend, and psychological testing as well.  A lot of evaluation goes in to the solemn task of being caretaker of another person’s donated organs.  The implications are enormous:  weighing the cost of giving a 51 year old man a heart and lungs versus a much younger man with two children yet to raise…it really did come down to who would have more:  more potential of survival, more to give, essentially, more left to do in this life.  With my husband’s underlying blood disorder, things would be complicated and we knew it.

After all the testing and all the consultations, we were told that he was not a viable candidate.  As one of his doctors stated, if the surgery itself didn’t kill him, the recovery would.  It’s one thing to know something in your mind, but to hear the words still sends a shock to the system.  Through our tears, we gathered paperwork and medicine bottles and quickly left, with that familiar sick feeling in the pit of our stomachs.  The knowledge that all the mental anguish and time invested, all the exhaustion and all our strength had made no difference was very discouraging.

But we had one last encounter to make and it would be the most bittersweet.  The final punctuation in an emotional chapter in our Book of Days.  On that last trip to the car with our luggage we were met in the elevator by a lung transplant recipient who gleefully showed us his surgical scars, without our even having to ask.  Rightfully so, transplant recipients are very proud to show their war wounds.  They have faced their mortality and are positively giddy at the chance to live again, and they don’t care who knows it.  I can imagine that would be our attitude as well, and it would have been charming if we hadn’t already been so devastated.  I’m guessing that Mr. Transplant was so thrilled at his second chance that maybe he assumed everyone would be willing participants in his joy.  And we were….we just had to swallow our own disappointment and tears in order to find the words to congratulate him and wish him well.  I’m sure it didn’t even occur to him that our presence there didn’t necessarily mean that we were to be members of his wonderful club.

On the long drive back home we discussed the pros and cons of trying again at another hospital.  Do we spend the good days chasing another chance at life, or do we spend those same days making the most of this life as we know it?

When his cardiologist first suggested transplant, I told my husband that I would state my feelings only once, and those feelings would not change, but that he needed to make his decision based on what feels right to him.  He didn’t need my input to cloud his judgement every single time.  He has not talked anymore about looking elsewhere.  I mention it from time to time, but it can only be his decision.  He knows that all he has to do is say the word and we will jump on that roller coaster once again.