When my kidneys failed more than nine years ago, I got in line for a transplant. At the time it wasn’t something I’d call a rational decision—or a decision of any kind, really. It was expected; it was the next step in the course of treatment: dialysis until an organ became available—then the transplant. I didn’t really think about it, I just got on the transplant bus.
Friends and family grew angry when I turned down offered organs. None of it was rational, or even explainable. I still can’t articulate my reasons. I didn’t want to be that indebted to anyone; didn’t want the burden of worrying about if they or their children might need the organ later; just didn’t want that much responsibility.
Three years ago—almost to the day, 26 July 2006—I put myself on hold on the University of Minnesota’s Transplant Center transplant list. I had been on the waiting list for six years and had already turned down three organs. The last one was an unfortunate college kid who was in town visiting his mom. They were out for dinner and he was shot in the head. That did it for me. I’ll never forget taking that telephone call and hearing the horrible details of how the organ became available. I didn’t want any part of it and, by extension, I didn’t want any part of the tragedy behind any viable cadaver kidney coming available.
I’ve written in detail about why I’ve refused cadaver kidneys in the past (here and here). None of that’s changed. I still know that everything happens for a reason and that corporations shouldn’t profit from the misfortune of the chronically ill. I don’t know why my kidneys failed or what I’m supposed to learn from it. That journey’s far from over but I figure I can travel that path just as well with a working kidney as without. The tragedy bit is more nuanced, but here’s how I’m working it out: When a door closes, a window opens. As the door closes on a donor’s life, a window opens for the recipient. Tragedy for one gives way to opportunity for another.
Three months ago, when my fistula failed, I knew I wouldn’t be able to make it through another fistula failure and the tunnel catheter placement that comes with it. So I decided then that I would slowly reactivate my status on the transplant waiting list. It comes with a lot of medical baggage: a trip to the dentist, complete physical, screening colonoscopy, cardiology consult including a stress test, a prostate-specific antigen screening, and a meeting with the surgeon. All that’s before I can be reactivated on the waiting list. Now that my catheter has been removed, I can get on with all of that. The especially good news is that I retained my place in line when I deactivated myself o the waiting list, so my waiting time for a transplant should be relatively short.
Why now? I’m not sure except to say that it feels like the right time. That and the male cardinal is back singing outside my Chinese medicine practitioner’s office.
Daniel Asa Rose, in a New York Times op-ed, notes the deficiencies with the current US organ transplant system: medical tourism accounts for 10 percent of the world’s transplant surgery; average wait for a kidney is 5-10 years; 85,000 patients waiting for a kidney (13 of them die every day waiting in vain). He outlines three ways to decrease the wait for organs to one year:
- Finance stem-cell research so we can start growing kidneys in vats
- Engineer better mechanical organs
- Reverse the presumed consent option so individuals would have to opt-out of organ donation
This last point is the easiest and fastest to implement. Belgium, Norway, and Spain have all done this (Spain has an 80-85% conversion rate of potential donors who end up donating).
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