PSA

I do not want to think about the whole transplant issue. It's an issue now. The problem is that the party line is that if you're waiting for a cadaver, which I'd have to if I want a pancreas, you wait three to five years.

It may as well be 25 to life.

I have options, I guess. One is to nag my brother until he gives up a kidney, plus trying to get into the islet transplant trials at the NIH. I haven't talked to them yet, but the criteria for the study describes my condition exactly. Another is to nag everybody I know until I find somebody who's willing to donate, and then wait for a cadaver pancreas. My endocrinologist says I'd qualify for a stand-alone pancreas transplant because I have such severe problems with hypoglycemia.

The wait on the pancreas might still be five years, though. The problem is simple: I don't want to work for the same company for the next five years so I can maintain the same insurance coverage. (Medical benefits now absolutely determine who I can work for, and I hate that.) I really don't want to go through transplant surgery twice, either. Of course, if I just get the kidney I'm still sick, as it were.

I keep repeating to myself that I should be grateful that transplantation is even an option. I should be glad to be alive and able to take care of myself. But don't I get to say "It's not fair!" It's not, of course. Everybody knows it's not fair.

The problem? The problem is not knowing. Yes, it could take five years; they could also call me in October and tell me to be at the hospital in two hours. I do not know how I'm supposed to live a normal life with this kind of knowledge hanging over me.

I guess the point is this: if it's not me, it's somebody else. Nobody wants to think about dying, but if you're not an organ donor, think about that. Make sure your family knows your wishes, just in case. There's lots more information out on the web, lots of sob stories and platitudes. I hate those as much as anybody, but the fact of the matter is that there are people in this world, people like me, whose lives are on hold waiting, more or less, for something close to a miracle.

Maybe you could help some of them. http://www.shareyourlife.org

before - after