Life After Giving Life

I donated my right kidney to save a friend's daughter's life in June 2010. I dreaded the pain but knew that it would pass. My age at 61 and my gender proffered a hard recovery period; one renowned transplant center would have rejected me as a donor. Internet research disclosed nothing about chronic pain as a potential after-effect of the donation. My transplant center knew for three months that, due to vascular anomalies, I would require a difficult right side nephrectomy. I had inquired repeatedly about what they learned and, although it would not have changed my decision, I was not informed of this until three days before the donation. The surgeon peevishly told me that the operation would be far more difficult—for the surgeon.

In the hospital, following the synthetic Morphine pain pump, I was prescribed Vicodin to take once a day. I have a high pain threshold, but I would find myself watching the clock until my self-assigned time at which I would take my medication and only one of two allotted tablets at that. I am a writer and I convinced my editor at NPR to permit me to do bookend commentaries pre and post donation. The first piece aired the Monday of surgery week. I spoke of my trepidation concerning the pain, but how my resolve stiffened once I had my first conversation with my fragile recipient and realized that I would have to marshal needed courage for both of us. After a month I recorded the second commentary, and I sounded road-worn and in pain. The Transplant Center refused to continue to prescribe me Vicodin after twelve weeks. Hand assisted laparoscopic is the standard surgical method for all transplant nephrectomies. With typical left-side nephrectomy, the surgeon reaches under the stomach muscles and bags the left kidney. In my case, four and half inches of stomach muscles were severed and the spleen, stomach, colon and liver were cut away from their supportive myofascial web and matter-of-factly moved to get to the right kidney. Once the kidney was removed, the resulting stitching of these organs to stabilize their position has caused adhesions and attendant pain.

A recent surgical graduate of the transplant center's program described the surgery to me in shocking, mind-numbing detail. The surgeon said he had never known of a patient in pain after twelve weeks. His rebuke questioned my veracity. Although I was an "altruistic donor," my motives were impugned. I went from being seen as a noble and honorable man to a complainer and thrill seeker. My general practitioner skeptically and begrudgingly continued the Vicodin prescription—requiring visits every 90 days.

Very fortunately, I became friends with another living kidney donor, a nurse and knowledgeable advocate, who taught me a lot about that woebe-gone and ignored world. Most importantly, she was affirming and wove me into the world of other donors. At a year post-surgery, I had a conversation with the head of the transplant center, during which he told me that there was no such thing as pain. He said pain was "an internal psychological perception and labeling of a neurological stimulus." I disagreed. I considered a third commentary on living with chronic pain, but in consultation with my "Morning Edition" editor, we widened the lens. She approached their Science Desk about doing a long Health Section piece on the plight of living kidney donors. The concept was accepted. A reporter in my home town was assigned the story. I put a small group of highly knowledgeable kidney donors together, one of whom was also a wounded donor, who met at my house for the reporter's interviews. Other national experts were spoken with and the bleak plight of living kidney donors was laid bare in a nine-minute piece on "Morning Edition". There was (is?) no longitudinal research in the United States which followed us, although European studies disclose that over one third of living kidney donors live with chronic pain. I had been a volunteer musician at a hospice center prior to my surgery and upon my return...