It occurred to me recently that I’ve pretty shamelessly promoted my memoir on this blog, frequently alluding to it or to my experience with kidney donation and expecting that to somehow fill in the gaps of a story most of you don’t know. And while I’d like to think you’d all just drop what you’re doing and take up 250 pages of my life for a while, I’m not that self-absorbed. Or stupid.
But if I’m going to continue on with this project, it seems to me that a summary of my own experience is in order. If you’d like to read the whole thing in all its dicey details, drop me a note and I’ll get it to you. In the meantime, this is a condensed version of my story.
In June of 2014, my then-wife, Stephanie, told me that a friend of ours, Stephen, needed a kidney transplant. This didn’t take me completely by surprise. I knew that Stephen suffered from polycystic kidney disease (PKD) and I knew that his kidney function had been steadily decreasing. Still, I hadn’t realized how close he was to renal failure.
Stephanie was enthusiastic about getting tested as a potential donor, but she was the wrong blood type. I also thought that I was the wrong blood type and for some reason, I felt the need to tell Stephen as much, relieving myself of a burden that I wasn’t even really carrying in the first place. That decision would prove to be fateful.
As it turns out, when it comes to organ donor compatibility, the plus/minus that follows a blood type is irrelevant. So I went from being theoretically incompatible (I’m a plus, Stephen is a minus) to being wholly compatible (I’m type O). And then I felt like a jerk.
“It’s okay,” said Stephen. “You don’t have to get tested. I’m not sure I’d want to, either.”
Then I felt like a big jerk.
I never expected to be a match. Honestly, if I had, I might not have gotten tested at all. Even after inserting my foot in my mouth, I could have quietly slipped into the background, never mentioned it again, gone on with my life without the disruption of giving up a kidney. Unlike so many in the kidney donation community, I never had an intrinsic urge to donate, and even knowing Stephen’s condition, I still didn’t. My confidence rested in the belief that at some point along the way, I’d fall short on one of the tests and then I’d get my official walking papers that said I did my good humanitarian duty and now I was off the hook. My confidence is frequently not in synch with reality.
Four months later, in October of 2014, I cleared the final test and was approved for donation. That same week, Stephanie, my wife of three years, left me.
If the juxtaposition of those two emotions doesn’t fuck you up, I’m not sure what will.
Had my transplant team found out about the divorce, they wouldn’t have allowed me to donate due to the increased psychological stress. So I lied to them.
That period of time between my separation and the surgery (about 2 months) crawled along beneath a fogginess that wasn’t so gloomy as it was nebulous and surreal. The life that I’d known had already changed so drastically–I’d moved into a new apartment, Stephanie and I had separated, I wouldn’t be going back to work for nearly two months–I hardly recognized it. In a way, this made it easier to remain calm as the surgery date approached. My reality had been so jarred that even something as major as donating an organ seemed like no big deal.
Finally, on January 8, 2015, I donated my left kidney to Stephen at NYU Langone Medical Center in New York.
Recovery was tougher than I’d expected. I learned that I have a high tolerance for drugs and a very low tolerance for pain, which rendered the morphine less effective than a man with five incisions in his belly wants it to be. They switched me to Demerol, which left me a veritable vegetable for the next few days. I didn’t mind.
Stephen, meanwhile, was doing very well. The kidney began producing urine almost immediately, and within twenty-four hours, his creatinine had dropped from over 6 to 1.9–nearly twice as low as the doctors expected it to go over the first twenty-four hours. He told me that even amidst the cheerful haze of the painkillers, he was having clearer, more creative thoughts for the first time in a very long time. That statement alone made it all worth it.
While on medical leave, I was laid off from my job. That really sent me into a downward spiral I’m still trying to climb out of. I felt, and sometimes I still feel, very childish about how unfair it all was. I’d given a man a kidney so he could live a normal life, while my own life had disintegrated into anything but normal. Now, a year and a half on, I’m still trying to understand what my normal is now and I don’t expect to find an answer any time soon.
The one thing that consistently brings me comfort: Stephen has a new normal, one that has seen him through graduate school and an excellent job opportunity, among other things. Donating to Stephen is just about the only thing from the last year-and-a-half that I don’t regret.
Want to share your story? Contact me and I’ll get back to you within a day or two!