778 days on the transplant list

I tend not to want to think about dialysis or my kidney disease when I’m not actually at dialysis, since I’m actually at dialysis for approximately 27 hours per week. I just want to do a quick catch-up on transplant news. (I don’t know why I feel the need to preface this by saying I’m just banging this out without much thought or editing, but that’s what I’m doing. I suppose I feel like the topic warrants a more thorough review, but I’m just not up for that).

Last week, I went to Charlotte for a day so I could attend an orientation for the kidney transplant program at Carolinas Medical Center. I had been looking forward to getting on the “Charlotte list” because the average wait for a cadaver kidney at Duke (and the three other North Carolina medical centers that share the same list) for my bloodtype, B, is 6-7 years. I had had the impression that wait at Carolinas might be about half. If I applied my two years on the Duke list to CMC, I might have a kidney in just a year or two!

Well, my visit to CMC cleared up any optimism. Perhaps the wait times at CMC had been significantly less at one point, but word probably spread of this, and the wait times are catching up. I suppose I don’t know the average wait time; they say the median time for B is 5 years.

There was all sorts of useful information provided at this orientation on what to expect during the process–what needs to be done to get on the list, what’s required following the surgery, all the meds one has to take for the rest of one’s life afterwards. Duke may have given similar information to me a couple of years ago, but they did not provide a similar orientation session.

However, I already knew that the operation is a major operation, that recovery is kind of a bitch, and that the anti-rejection meds are pain in the ass for the rest of your life. The bottom-line for me was, how soon can I get a transplant in Charlotte, so I can get on with my life?

And the answer of, well, on average (roughly), THREE years (if I apply my two years from Duke), was NOT what I wanted to hear.

Six months ago, I thought there was a chance I could get a transplant by January or Feburary. Three months ago, I thought that transplant could happen in June. A few weeks ago, I learned that transplant would not be happening. I’ve got no other live donor possibilities lined up. Best case, it would seem, I’m looking at at least three more years of dialysis.

I’m just spilling out my thoughts here…not censoring…not caring if I sound ungrateful or feeling sorry for myself…I don’t know how I’ll get through another three years of this. I can’t imagine taking the last six months and multiplying them by six. And my kidneys aren’t going to get any better. There’s a big difference between 8% functioning and 0%. If I actually did have to watch my diet closely and my fluid intake, I don’t know if I could do it. I DON’T KNOW IF I WOULD CARE.

But then there’s the question of, so what if I did have a new kidney right now? Then what? What would I be doing differently right now? What do I want to do with my life? As I’m asked again and again, If you could do anything, what would you want to do? I have no answer to this question. I don’t have a clue. If I had any idea, I can imagine how I might care about taking care of myself and preparing for that day that I get a new kidney.

That’s my venting for the time being.

I’m going to hit the Publish button and feel a little bit better, just because I know these thoughts aren’t solely stuck in the space between my ears.