From the archives …
Tweet with us!
It seems that it’s hard to find an organ transplant/donation blog or news article without the heartwarming stories of organ recipients being introduced to the family of their donor. Not here. That’s a piece missing to my story that I would love to be able to share. But I haven’t the first idea who or where that family might be. As I’ve written, I know that he was 24 when he died and allowed me to live. I know every moment of every day that the liver that he was born with is now tucked in me, keeping me alive. I know the appreciation and the joy that my family, friends, and I feel. But who was this young man? How is his family doing nearly two years after he left them? I’m sure they are still grieving even as I live. Are they OK with their decision? Do they ever wonder about how I’m doing or who I am? I wrote them a letter through my transplant coordinator trying to find the right words. But they have chosen not to communicate back.
That’s OK. I’m not that selfish as to throw a tantrum. Just as there was no obligation for them to agree to organ donation, there is no obligation for them to be in contact with me. I know that is their decision. I know that some families are not comfortable in that kind of communication. I’ve been doing this long enough from the donor side to know that the act of organ donation is enough for many. So, it is OK. But I think of them and I actually worry about them – even while “it” is OK, I have to have faith that they are OK.
Faith – that’s a key commodity to living on the continuum of organ donation and transplantation. Uh, oh, you say – hear comes the preacher. Maybe, but let’s think about faith for a moment. In the New Testament faith is defined as “…the assurance of things hoped for, the conviction of things not seen.” Or, if you would prefer a secular definition, a popular dictionary defines faith as:”belief or trust: belief in, devotion to, or trust in somebody or something, especially without logical proof.” Simply put having faith is a matter of trusting the world around us, even when during that times when that trust doesn’t seem to be warranted or falls outside the boundaries of good old fashioned logic.
Well, I’m here to tell you that one of the things I learned as a patient in general, as a transplant candidate, and then a transplant recipient, is that the processes involved in all of that requires a level of faith that surprised even me. As a member of the health care team, I was always the one that would argue for full transparency from the care teams of which I was a part. I chaired our Ethics Committee for many years, and would never let a consultation happen without the patient and/or family at the very least being told of that consultation and being invited to attend. I had an ethical problem of talking about people behind their back.
As a patient, I quickly found out that while transparency was indeed aimed for with the team caring for me, there was a lot going about which I knew nothing and in which I, or Sandra, was not included. I had to trust, or have faith, in those doing that care taking – the conviction, even though I couldn’t see it, that they had my best interests in mind. I know as a provider I would talk with other chaplains, social workers, doctors, nurses, etc. about a patient or family. Did I tell them about all of that? Of course not. Team meetings, care plan meetings, rounds – all often occur outside of the patient’s awareness.
Best example? The COMMITTEE. As a Presbyterian, I’m used to committees. All hospitals have committees, and then there are some Committees. But when you are told that you need an organ transplant, there is the COMMITTEE that will decide whether or not you will move from candidate to being on the transplant list – that waiting line that makes you yearn for the hour and a half queue for the Harry Potter ride at Universal. The COMMITTEE is an interdisicplinary group that is a good thing. The stewardship of scarce organs is a huge responsibility – deciding who may or may not be listed for an organ is a very difficult task. I know. I’ve served on the COMMITTEE. But when your life is literally riding on their multi-focused discussion – without you there to represent – it becomes something akin to the Vatican when a new pope is chosen. You will me most of the people on that group. And I’ll tell you, when you do, you don’t need your mom to tell you to be on your best behavior. I remember talking with the surgeon and his fellow. I remember talking to the coordinator, the dietitian, and the social worker. The psychologist caught me on a bad day – and that’s what I remember – that she and I met. It was one of those days when I was pretty fogged in neurologically. I don’t know what she asked. I don’t know what I said. I worried that that time may have made a bad impression. And I told Sandra that – and she reminded me, to have faith. Faith in a process I couldn’t control, faith in people that I knew were going to take care of me, faith in the self that I couldn’t always control. Faith is what gives hope – and faith and hope are founded upon love.
So they made the decision that I would have a transplant. You want to believe in something outside your normal way of thinking? Try believing that someone is going to die so that you will live. I still don’t get that. I’ve written it before, and will again. But living on the list is a act of conviction that this will happen even without logical proof. That is why knowing who the young man who defied what my mind can grasp remains so important to me. I want to know “that’s just the way Joey was”. Or, “that you are doing well and helping others is enough reason for us – it really has been a help knowing that”. Then I’d know that when the crossroads of our lives met, there was something logical that made us turn together on the road of faith, hope, and love.
But then, empirical knowledge may not be all it’s cracked up to be. Maybe I’ll just have to accept my good fortune on faith. Maybe I can’t explain everything and know everything. Maybe everything that I’ve experienced that I had zero control over is exactly the point – we’re not in absolute control of anything. And that’s why faith exists. It’s easier to live in doubt and fear – tried it. Faith requires work. Believe me, it’s worth it! I think that living this whole thing in faith made my young donor’s gift even more special.