Published September 15, 2020 | With an ADPKD diagnosis, there’s more than a 50% chance a patient will develop kidney failure by age 50. Dialysis or a kidney transplant is the only treatment option once a person has kidney failure. Choosing to pursue a kidney transplant can be a long process, but as Martin Voet will tell you, it’s well worth the wait. This is the story of his path to transplantation that began in 2019.
Tell us a little bit about your journey with PKD. When were you diagnosed?
Martin: I first found out that I had PKD about 35 years ago when an elderly uncle of mine was in the hospital for unrelated reasons and was told he had cysts on his kidneys. My mother died of a brain aneurism some years earlier and we put two and two together. We discovered that my brother and I both had PKD, while my two sisters did not. Since then, we’ve learned several cousins on my mother’s side also have it.
How did your kidney transplant journey begin?
Martin: I had a relatively mild case [of PKD], so I followed its progression annually from then to the present. In 2018, my GFR hit 23% so time was getting short. In early 2019, my GFR hit 19% and my nephrologist referred me to the Mayo Clinic in Arizona, as I live in Southern California. The waiting list for a deceased kidney in Arizona is half that of California, so it seemed like a good idea. I was tested by Mayo in the spring of 2019 and approved as a recipient.
I received my transplant at age 77. Older patients are often refused or discouraged from getting transplants at many transplant centers for a variety of reasons, but I was able to get a transplant at Mayo Clinic in Arizona, who accepts patients based on need and health rather than age alone.
How did you prepare for your transplant surgery? Did the pandemic impact your surgery?
Martin: Susan DeRemer, from the PKD Foundation, mentioned a woman named Risa Simon who might be helpful. She’s the author of In Pursuit of a Better Life: The Ultimate Guide for Finding Living Kidney Donors. I read her book and prepared a “dear friends and family” letter explaining PKD and my situation. Then I sent it to everyone I knew. In response, I received four offers for a living donor. Two of the offers were rejected early due to the health issues of the proposed donors. The other two potential donors went to Mayo for a week of tests in early 2020 and one was officially qualified in March 2020. Luckily, the COVID-19 pandemic didn’t adversely affect the timing of surgery.
The only problem was my donor had a different blood type from mine, so we were incompatible. The solution to this problem is arranging a paired match where my donor’s kidney goes to someone else who needs a kidney and in return, a suitable kidney is simultaneously provided for me. This is done through a national organization called The National Kidney Registry, the nation’s most active kidney pairing donation program.
What was it like finding out you had a match for a kidney transplant?
Martin: In May of 2020, I was informed that a match had been found and surgery was scheduled for June 3. On the morning of the day of surgery, my donor had his kidney removed and sent to Wisconsin. That evening I received a kidney from a live donor in North Carolina. In paired exchanges, the identity of the living donors is kept strictly confidential, so I don’t know anything more than that.
How has life changed for you after your kidney transplant?
Martin: I was only in the hospital for two days and then in recovery at a nearby house for six weeks while they fine-tuned the meds and made sure everything was okay. I had a rapid recovery, very little pain. Now two months later, I’ve returned to an almost normal life with increased energy and a 50% GFR. The “almost” part is because of reduced immune response due to the drugs needed to prevent rejection. There are strict dietary and cleanliness rules to avoid getting sick and to maintain kidney health. A small price to pay for a dialysis-free life.
I’m playing 18 holes three times a week again and feeling great. I can’t say enough about how excellent the Mayo Clinic has been with in-patient care and follow-up.
To learn more about the kidney transplant process, visit our website.