Sunday, November 20, 2011

Kidney Donations and Diabetes

I just came from a memorial service for a mentor of mine. I met her six years ago, when I was seventeen and she was about twice my age at that time. She was facilitating an advocacy/support/education group for transgender youth. It met every Wednesday and once I started going, I was there every week (except for movie nights).

Ten months later, I was diagnosed with diabetes. As I've probably said before, I had a lot of different emotions around my diagnosis. But on the night that I went back, I was giddy with fear, and the nervous excitement of being out on my own (no nurse present) with diabetes. And I said that I had just been diagnosed with diabetes (I didn't say type 1 because the type wasn't confirmed until three weeks after my diagnosis). I said I was going to be carrying insulin and syringes and doing things that might make it look like I was breaking the rules, though I wasn't.

Lois (that was her name) did something with that that I didn't see coming. She used me as a (good) example about how we should take care of our selves and of our health, and then she talked about her health. I had known her for ten months; I had spent at least 60 hours with her by that point. I had not known that her kidneys had failed and that she had spent seven years on hemodialysis. She said that, after seven years, when her doctor told her that he had a kidney for her, at first she thought he was joking. Lois told us what it took to take care of herself on dialysis and to keep going. She showed us the big bumps on her arms that they had used. She told us about calling dialysis centers when she traveled. She told us about what it meant to be responsible.

About two months later, Lois said, "Guess what Jonah?" and she pulled out a blood sugar meter. She had been diagnosed with diabetes, too. Her diabetes was probably secondary to her transplant medications- transplant medications are known to cause insulin resistance.
There's even a name for diabetes caused by transplants: NODAT. The acronym stands for New Onset Diabetes After Transplant. Estimates for prevalence of NODAT among transplant recipients varies by a lot. I think 15% is a fairly good estimate.
Lois's diabetes was treatable by oral medications. NODAT inorporates elements of both type 1 and type 2 diabetes in that it features insulin resitance but often damage to the pancreas as well. But most of the time, it is treatable as if it were any other type 2 diabetes.
Unfortunately, NODAT is something that also develops in pancreas recipients. Sometimes you can trade type 1 diabetes for type 2. (Insert sigh)

Lois's body eventually rejected the new kidney, and it was removed, and she went back on dialysis. Unlike a lot of people on dialysis, Lois went on working. When I last saw her, in September, she was busy at work. Lois died last week at the age of 41 years. It had been thirteen years since her kidneys had failed. In those thirteen years, Lois accomplished more than most people accomplish in a life time.

I went to her memorial service this evening. Today is the transgender day of remembrance. For the past many years, we in Chicago have had a memorial service for the dead (killed by transphobia) followed by a celebration of living transgender people. Our celebration has taken the form of a talent show (I've performed a couple of times), and the master of ceremonies was Lois.
Tonight we did not have a talent show. We had a memorial for Lois instead. Her mother and sisters were there. Her church family was there, and the transgender community showed up in droves. The room in which we met has 156 seats. Every seat was filled, dozens of people sat on the floors, and a small crowd stood near the doors.
People were there for more than one reason. Those of us who spoke mentioned three. Lois was a mentor to hundreds (if not more) members of Chicago's TGLB community. She founded and ran groups. She inspired people. She made us want to be the people she said we could be (reason one). Lois was also community to a lot of people. She was a faithful churchgoer, and she still knew the people she had known in high school. She drew people into all of her communities- her faith community, the queer communities (which she kinda created), and communities of activism (reason two). She was also a vibrant, funny, fun, humble, righeous person that people just liked (reason three).

One of the things I found myself thinking about during and after the memorial service (though I was mostly thinking about Lois and about what I wanted to say about Lois in my speech) was that if Lois had given up when her kidneys failed- if Lois had lived the typical (for Americans) two years on dialysis or if her spirit had failed her then- then most of us there wouldn't have known her. Lois's huge accomplishments happened while she was sick, while she was making two or three appointments per week for dialysis, or dealing with a transplant, which had its own problems. Renal failure is not the end of life.

Lois died fairly young, but she got done a whole lot that wouldn't have happened had she died younger. I can only hope that I get as much done in my life, whether I die at 40 or 80 or 120.

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