My brother Kenny received a kidney transplant the week before he turned 18. Most kidney transplant patients do not have their diseased kidneys removed. Regularly, before they receive transplants, their native kidneys are non-functioning and have shrunk to the size of peas. The surgery to have them removed, a nephrectomy, is invasive, would be pointless, and would add an unnecessary risk. Kenny was fortunate to receive a kidney soon after going on the organ transplant waiting list. As a result, his diseased kidneys still functioned (albeit poorly). Unfortunately, Kenny had issues with his transplant and the doctors determined that the native kidneys might be causing the issues. Therefore, they decided on a nephrectomy. Fortunately, his second surgery in a week went well and the doctors were right. His new kidney functioned well, and continues to function well. As his first act as an adult, Kenny signed his failing kidneys over to Duke University for research. Duke then sent part of his kidneys to Harvard for stem cell research. Scientists had never had such intact kidneys. With Kenny’s kidneys, the researchers at Duke were able to make significant advances in understanding how our family’s rare form of nail patella syndrome causes kidney disease. They hope that one day a medicine might be developed to protect the kidneys and avoid failure. I’m proud of my brother, both for overcoming his obstacles and for playing an important role in furthering research on this important issue.

In 2019, we visited the researchers in Raleigh. They showed us what they’d learned. It was a fascinating presentation that gave us hope for the future. Below are pictures from Kenny’s transplant and the research.