Getting Our Child Off Dialysis

I was 35 when I became a living donor in 1996. The recipient was my only son, Joseph, 10 at the time of his kidney transplant. He turned 25, he is still sustained by a kidney one generation older than he is.

Joseph was 9 when we were stunned with a diagnosis of kidney failure. A rare disease with an unknown cause, anti–glomerular basement membrane (anti–GBM) left our firstborn dependent on dialysis to survive. Dialysis treatment would continue for 22 long months. His mother, Laura, and I learned how to operate a peritoneal dialysis machine so he could be treated at home, where typical treatments lasted 12 to 14 hours a day.

A kidney transplant offered Joseph’s best chance at a normal life. Laura and I were tested, both found to be a match, and given the choice of which of us would proceed with additional testing as the prospective donor. This was something I really wanted to do, and it made sense for our family situation. At work, I was able to build up enough sick leave and vacation time to take several weeks off without losing a dime of income, which would not have been the case if she had stepped away from her job to donate. My recovery would leave her free to continue running the household, something I had no special desire to step in and do.

Many things made living donation an easy decision for me. The natural love a parent feels for a child, combined with this rare opportunity to improve his life and increase his opportunities, made me want to help. The innocence of a boy, halfway through his childhood when he got sick, made Joseph a sympathetic patient. My religious life helped inspire a strong service ethic and desire to make a difference. And I felt like the natural choice to step up and do this because my son and I had so much in common already. Coming into the world 25 years apart, Joseph and I were both firstborns due in September and born on the second Friday of October between 4:00–5:00 am. We both measured in at 21 inches long; he even looked like me. Later, Laura joked the resemblance helped the transplant succeed; his body didn’t reject my organ because it couldn’t tell the difference.

Not that my motives were entirely pure. The thought of feeling successful, doing something meaningful that would allow me to grow, that a gift of this magnitude might increase my spirituality, all increased the appeal of donation and contributed to the selfish side of it. The fear of failure, and how I would feel if I couldn’t pull this off, was also a powerful motivator. The last thing anyone had to worry about was convincing me to donate. This was going to be a big deal in my life as well as his.

Despite the struggle with mixed motives, I genuinely wanted to help my son. Dialysis did a great job of keeping Joseph alive, but it was a poor substitute for a functioning kidney. Thin and gaunt, he gradually seemed to be wasting away. Getting approved for a transplant was one thing; getting it done was something else entirely.

Three straight times, the transplant had to be canceled due to Joseph’s ill–timed infections. A planner by nature, the repeated delays drove me nuts, preparing for several weeks off work, only to need them later instead. I felt helpless, and couldn’t help but wonder if we were headed for a bad ending. To get an idea of what we were up against in a worst case scenario, I called a cemetery for some basic information (a part of the story I did not tell Joseph for several years). I wanted to know if there were gravesites available in the area where two relatives were buried. There was one spot available. I could only hope that piece of information was not a bad sign.

The third cancellation was especially heartbreaking. We were so close, a day away from admission to the hospital when...