Thursday, December 13, 2007

Organ Donation as a Diabetics' Issue

I'm on the Illinois Organ Donor list; if I die it's okay with me if they re-use my parts. Obviously, not the pancreas. I'm really comfortable with the idea of them using my kidneys or liver, not really so comfortable with the rest of it, but whatever.
One of the things that really strikes me about the Illinois organ donation campaign is who they've been featuring. The email I received from them today included this testimony:

I know firsthand the impact that a donation decision can make. For 25 years, I suffered from juvenile diabetes and was in dire need of a kidney and pancreas transplant. Thanks to an organ donor, I received my successful transplants in December 2006, essentially curing me of diabetes.Today, I am proud to serve as Honorary Chair of the Donate Life Illinois Workplace Partners program to help make a difference for the more than 4,700 Illinois residents who are still awaiting lifesaving transplants as I once did.

When I stood in line to get my state ID after I changed my legal name in January, I saw the walls covered in organ donation stuff. There were pictures from kids who received organs, but only one written testimony. It was from another former diabetic who had also received a kidney-pancreas transpant as a young adult. That was really sobering for me as a fairly new diabetic.

I have four brothers, but my blood type is O and they are As. My parents are in their early 50s; I don't think that with A1cs in the lower sixes, my kidneys will fail in the next twenty years, so that would put them in their 70s at least by the time I might need a kidney. There is no absolute upper age limit for kidney donors, but kidney function in people over 65 is usually reduced enough that their kidneys aren't considered good enough to donate.

So when I made my diabetes collage in mostly black and white, I included an organ donor card in color.

The average person who goes on dialysis dies in less time than the average wait for a cadaver kidney. Dialysis is a particularly dangerous option for diabetics. People on dialysis die of a number of causes. One of the larger ones is poisoning. Eating the wrong stuff or too much can be deadly if your kidneys don't work. But when you're diabetic, it's harder to stick to eating an exact amount. Another issue that sometimes kills those on dialysis is infections, which diabetics are particularly vulnerable. One of the other problems of dialysis is depression. A lot of people on dialysis let go of the will to live, for a host of reasons that I'm guessing you can understand.

However, I would still include dialysis as one of the top ten improvements in diabetes care from the last fifty years. I have a friend who waited seven years on dialysis for a kidney transplant; I hope that I would be able to do the same if it came to that.

Receiving a kidney from a living donor has a greater success rate than from a cadaver donor in general, but diabetics sometimes would be better going for a cadaver donor so as to get a pancreas and kidney together, which has a greater success rate than a stand alone kidney. If I could get euglycemia in a permanent sort of way, I would donate a kidney.


Scott said...

One additional element that you didn't mention is dialysis' impact on hypoglycemia. Because the autonomic nervous system is impaired by the kidney failure, what little protection we once enjoyed from hypos is also impaired further.

If someone has to get a kidney, I cannot understand why 100% of them do not do a simultaneous kidney and pancreas transplant, especially since the kidney will function better that the glycemic control that only functioning beta cells can provide.

-Scott (Campaign Manager) said...

Hey Jonah,

Thanks for the support and spreading the word on our outreach efforts with Donate Life Illinois. I'm still always blown away by the fact that young and old can be affected by organ/tissue donation. Few issues affect such a wide range.

There is no doubt that dialysis is an intense struggle for a lot of people, but we also hear from patients all the time that are grateful that they have a lifeline.

A couple month's ago, we did a video on a patient named Corinne ( who was on dialysis at the time (she has since rec'd her kidney transplant). It was very cool to see just how upbeat and grateful Corinne was despite being on dialysis.

Thanks again for spreading the word. Be sure to remind Illinois folks to register at if they haven't done so since Jan. 1, 2006.


Bad Decision Maker said...

I am currently registered as an organ donor, but having second thoughts. Because of my diabetes (and mediocre control), I don't think they'd really want many of my organs - possibly lungs, maybe liver or skin. But I think it's more likely I'd end up as a cadaver for disrespectful med students, and I don't want that.

I haven't looked seriously into it, I don't know anything about my sister's blood types, but I like to tell her that her right kidney is mine. Haha. I'm mostly joking, but only mostly...

Jonah said...

Kidneys with mild diabetic damage repair themselves in nondiabetics- they'd probably still take them.
Your body cannot just be switched to be donated for med students. Have you talked to your family so they know what to do with your body in the even that it dies with viable organs?