By Greg Scott
My son, Steven, was 18 months old when we learned he was afflicted with congenital kidney disease–autosomal recessive polycystic kidney disease (ARPKD) to be precise. Steven was one of the toughest people I have ever known. From the start, he was determined to lead a normal life and despite the many complications from his disease that included high blood pressure, bouts of serious esophageal bleeding and daily injections of growth hormone, Steven did exactly what he set out to do. He lived a completely normal life that even included contact sports. Ice hockey and golf were his favorites, and he participated in all the other activities of a growing and developing young man.
Right after his graduation from high school, his kidneys stopped functioning and he had to be placed immediately on dialysis. That was the only time I ever saw him despondent about his condition. As a family, we went into action. All of us—I, his mother, brother and sister—were tested to determine who would be a match for donation. As it turned out, I was the best match and two months after Steven’s kidneys failed, we were both admitted to New York Presbyterian Hospital where the transplant took place. The transplant was successful, although Steven did have some post-op complications that he fought through with his usual strength and overcame. Soon afterwards, he was able to attend college and felt blessed to be leading a truly normal life. And then two and a half years after the transplant, we lost Steven to a tragic accident that had nothing at all to do with his kidney disease.
People sometimes act as though I did something special as a donor. I did not. I did only what any father would do under the circumstances and my life as a living donor is absolutely unchanged except for the huge void created by Steven’s passing. Steven couldn’t do anything about his kidney disease except treat it, live with it and enjoy life to the fullest, which he did. The rest of us CAN do something about kidney disease and it is why the mission of the NKF is so important to me and for all of us. We can prevent kidney disease and we can certainly slow its progression for those among us who are impacted. We have way too many people suffering from end stage renal disease, or kidney failure. Early detection and treatment are critical to preventing the onset of kidney failure. And, organ donation, most importantly, living donation, needs to be much more commonplace. Please take the time to learn what the NKF is doing to end this hardship and donate to our cause—if not money, your time, as a volunteer. We can make a difference.