My son was diagnosed with Alport syndrome in the fall of 1999. This is a genetic condition characterized by kidney disease, hearing loss, and eye abnormalities. People with Alport syndrome experience progressive loss of kidney function. He asked if I would be willing to get tested (it was much less rigorous back then!) and we started the process around the end of 1999. Ohio State University was his first choice for transplant center but they did not do laparoscopic removal. As he explained it to me, they would slice me wide open, intensive care for several days, major risks. He did some investigating and Northwestern had been successful with their laparoscopic nephrectomy procedures so it moved to first place. They were absolutely fantastic to work with and as the test results looked more and more promising we were able to schedule surgery for March 31, 2000, in Chicago.
Nearly 20 years post-op. John’s son (left), transplant surgeon Joseph Leventhal center, kidney donor athlete John on the right.
My activity level before donation was intense and all short distance. I competed in Olympic distance triathlons and running events up to 10k in length. 7 years pre-donation I was at least 50 pounds overweight. I had a family practice physician who really got after me to lose weight and to start some sort of exercise. I ran my first 5k in December of 1992 and have never looked back.
I credit my activity levels in the years prior to donating with having me in good enough condition to donate; the additional payoff was in the speedy recovery time. Looking back, the decision to donate was a “no brainer”. After all, I had two. And since then I have not regretted the decision or experienced any downside. Now, when I look at the running and tri groups of which I am a member, all I can think of is “Hey, I did it. Why can’t you?”
My recovery from surgery was easy. No major hurdles at all. I was back on a bike 4 weeks post-op. Ran a 5-mile race on Memorial Day, 2000. Did my first Half-Ironman triathlon end of June 2000, just three months post-donation.
One thing that is different post-donation is that I tend to not tolerate cold as well. I am on anti-hypertension medication – more as a precaution so as to take better care of the single kidney. I have to be very careful to make sure hydration is sufficient on long rides/runs. Other than that, no physical issues. And I believe that is what we all need to stress! The active lifestyle allowed us to donate, helped a rapid recovery, and now keeps us in shape. I also have regular checkups and blood labs with the nephrologist every 6 months.
I am fortunate in that the nephrology practitioner assigned to look after me is now a close friend. She is also a cyclist and runner so she “gets” that lifestyle. Since donating the kidney I found I enjoy longer distances. No causal connection, though. Totals to-date: 6 Ironman triathlons. Probably 25-30 Half-Ironman triathlons. 20 or so marathons and a whole bunch of half marathons. Many, many long-distance cycling events. I lift weights twice a week during the summer and three times a week in the off season. My son, the recipient, had never been exceptionally active. Since he received the kidney he has become an avid runner and is trying hard to catch up to my number of marathons.
I have done a little advocacy work since the donation. Right now working with Lifeline of Ohio (their focus is on deceased donations) and trying to get in with the transplant center at Ohio State to get their help in organizing to get as large a group as possible of organ donors and recipients to run the Columbus Marathon in October of 2020. We are doing a very small “dry run” at this year’s event to see what all we need to do for next year. (For years I have been part of the group that puts on the marathon – I am responsible for elite athletes.)
I have also connected with more living donors recently than in years past as the population of donors is growing. I was of the first hundred laparoscopic donations done at Northwestern. There were fewer living donors then. Now it seems as if they are all over the place. There were hundreds in April of 2018 in Chicago setting a world record for the largest ever gathering of donors. Locally there are at least half a dozen in my running group!
If you are considering donation, one thing I would tell you is, Do it! There are not many ways in which you can say you saved a life. And if not actually saving a life you are giving some a chance at a mind-blowing increase in quality of life. Parts is parts. You don’t need both kidneys!
