Last week, I had a meeting at the transplant clinic, to re-evaluate me to get back on the transplant list for a kidney. The first time I did this was exactly twenty years ago, so it was kind of a weird homecoming. My father went with me, and we felt like we had a good meeting - everyone who came in seemed to know my past, knew my medical history, etc. There were two people on the team who had been there for 20 years and known me every step of the way, and they were happy to see me. I left the evaluation, after giving copious amounts of blood for testing, feeling good. I knew it would be more difficult, being that it would be my fourth potential transplant.
I have lived, breathed and slept kidney disease, dialysis and kidney transplants for two decades. Anyone who knows me knows that I have gathered an extraordinary amount of knowledge on the subject, and I've talked about it at length to anyone who will listen - I've been published in national magazines about it, been on national television, and had my work published in a best selling anthology book series (Chicken Soup for the Soul). I've given lectures about kidney transplant and dialysis. More importantly, I have survived and thrived for twenty years with End Stage Renal Disease (ESRD). That's full kidney failure, for which there is no cure. Transplantation is not a cure - it is just another, better form of treatment. I have had my complications with it - my first and third transplants in particular. The first being damaged by a follow-up surgery that went awry and my third transplant having had damage that was undetected before implantation.
On Friday, as I was getting my kids ready to go out and do something, I got an offhand phone call from the transplant clinic - I thought at first it was just them calling to confirm a CT scan they had set up for me. Instead, it was someone I did not know telling me that they had discussed my case at "committee" that Friday, and they had decided to decline to give me another transplant.
I had prepared for this eventuality - and while it hurt, I had other plans. There were other centers in other cities I could have gone to. But the next part is where I took extreme offense. This poor person who they had call me to do their dirty work said "They said it was because of a history of non-compliance..."
Denying me based on being fearful of the risk and potential for it failing and looking bad for their program... I could handle. But trying to put the onus on me and declaring me "non-compliant" had me seeing red. This is them passing the buck - putting it all on me, instead of them. Anyone who knows me knows that I am a traveling pharmacy - I never go anywhere without the cadre of pills required to keep my transplant from rejecting. I am a stickler for it, I even recommend a service I found that helps people take their daily pills (a pharmacy that sends medications labeled in packages for each time of the day, it's called PillPack. Amazon bought them a few years back, but I've been using them since well before that) When I was a dialysis patient, I never missed a treatment. That's being compliant - people are often very flippant with dialysis, many skip treatments, etc. I couldn't. I knew it would kill me. One does not survive for TWENTY years with ESRD by being non-compliant.
Labeling me as such puts me at odd with other programs; it goes in my chart. And any hope for me to get a new transplant at all could be squashed. This is a tarnish on my name.
I don't want to die in the chair of dialysis. I will confess, I have nightmares of this - I do not do well in dialysis, and I know I will have to spent the next several years on it again. I dread it. It will be a giant burden for me, and for my family. I'm not alone in this; I have two kids I love more than anything else in this world with me, and I just want to be there for them and be the Dad they deserve. This news has just broken me - it hasn't been easy since my last transplant; it never worked right, and though I've been off dialysis, I've been sick a lot, I've had multiple uncomfortable biopsies, and my issues with my spinal stenosis have gotten worse. My mobility sucks as well. I'm trying my best, but this news has just beat me to the ground. I'm not ready to die yet, I'm not ready to give up, but my decline is inevitable. Proclaiming me non-compliant in the face of saving their own face at the transplant clinic is tantamount to a death sentence, and I can't have that.
Anyway, I just want to thank you all for your support, love & friendship. I've not been in this journey alone for twenty years - it takes a village to raise and idiot, and boy... am I that idiot. So many people have given so much of themselves just to push me along, and I am so much more thankful than I can ever say properly. Thanks for reading all of this and thanks for being wonderful. I'll keep fighting, best I can. I'm still waiting to talk to someone official from the transplant clinic on this.... but right now, it feels quite bleak.
