The Evaluation

Last Tuesday I had my first transplant evaluation appointment at MUSC.  It was nothing like I thought it would be, with most of the day consisting of my waiting in a tiny exam room with my daughter and son as one medical professional after another paraded in and out.  They each asked me the same questions over and over, with the exception of the social worker, whose list of inquiries was the most extensive.

I was already nervous before I arrived, after having read many an online piece about who gets turned down for transplants and why.  I walked in the door knowing that I would be scrutinized for my lifestyle, my employment status (or lack thereof), my relationship status and whether or not I have a dependable support system.  I am blessed with many loving people in my life and for that I am most grateful; but I am also aware that when it comes down to the day to day functioning of life, I am pretty much on my own.  In any regular circumstance, that wouldn't be a problem for me, but when I was quizzed about "caregiver status" I felt like I had to be less than honest about my situation.

The questions I expected, although not easy to answer, seemed par-for the course for a transplant candidate, but there were unanticipated questions that really caught me off guard.  For instance, "Have you ever been abused, Rebecca?"  Of course my answer was no, but after my appointment that question still nagged at me.  Here I am a week later, and I'm still pondering it.  What if I had said yes?  What if I had been abused as a child or battered in an adult relationship at some point?  Would that really nullify my life so much that I wouldn't deserve a chance to keep living?  What else about me, my past and my outlook on life could give someone who doesn't really know me the impression that my life isn't worth prolonging?

Kidneys are scarce, transplants are extremely expensive and the medications required to keep that kidney after transplant are outrageously pricey.  I understand that they have to use discretion when deciding who gets a chance to live and who doesn't, but I would never want to be put in a position like theirs.  I would never want to have the fate of another person's life--their very existence--in my hands. It seems so strange to me that mere human beings get to decide who lives or dies in this way.

I try to be as compliant as possible with my care, but nobody is perfect.  I often feel as if my nurses and doctors are shaming towards me if they get the impression I haven't done every tiny thing as they would have me do it.  I once told my doctor, "There is more to life than just staying alive."  He kind of nodded his head at me, signaling that my choice of words opened up a whole new subject that he was not comfortable discussing with me.  His job is to keep me alive, period.  My job is to stay alive, but to also create a life for myself that is worth living.  Living a good life just isn't as simple as it should be once you find yourself fighting to just stay alive.

The stress of figuring things out takes its toll on a person.  The financial devastation, the loss of independence and freedom to come and go as you please start to make you feel like a prisoner in your own world after a while.  I live with the fear of becoming homeless lately, of letting my kid down, of waking up one day only to find myself surrounded by memories of what a good life was like.  Sometimes I want to fight with all I have in me, and other times, I just want to surrender to it.  Does my occasional overwhelmed sense of resignation render me unworthy of a transplant?

For now, I am just waiting to hear back from MUSC, knowing that to a large degree, the longevity of my future lies in the decisions of a few people who know nothing more of me than what they could learn in a 5 minute Q and A session.  It is an awful lot like waiting for a  phone call after you've had a job interview, with your future resting squarely on the head of someone else, only this time, it's not just a job, it's my life.