Today is World Kidney Day. This year's theme is "Kidney Disease & Children: Act Early To Prevent It!" but since its inception in 2006, the common goal of every theme has been to make more people aware of kidney disease early in its course, in hopes that it’s progression to end-stage kidney disease may be prevented or at least delayed. While there is no argument from me about how wonderful and desperately needed this focus is, I’d like to see a little attention go to the ones we missed. The ones who already have end-stage kidney disease. At age 26, my husband started dialysis, but I wouldn’t meet him for another 5 years. Although I was a primary care doctor at the time (no, not his—that's nasty) and had seen patients on dialysis during my medical training, I couldn't see as primary care doctor what I saw in those early months as his girlfriend. I listened to him vomit every Monday morning before going to hemodialysis. I sometimes sat with him for the 4-hour treatment he had little choice but to endure every Monday, Wednesday, and Friday. I watched him say a silent prayer that this time there would be no cramping in his legs, his hands, his back, his everywhere. Like there was last time. And many times before that.
So when the local transplant center said a kidney transplant from a deceased donor would be at least another year, I decided to give him one of mine. Less than 4 months later we had surgery. That was nearly 11 years ago.
He went on to making plans again like someone who believed they had a long life ahead of him. I went on to become a kidney specialist.
As a nephrologist, I met another young man who started dialysis at age 26. He was the youngest of 3 sons, but both of his brothers said no to giving him a kidney. You’re fine on dialysis, they said. You can wait for a kidney from a dead person, they said.
Then one of them came to visit.
He saw baby brother managing the day after day after day of peritoneal dialysis. How he would program a machine to push and pull dialysis fluid in and out of the space between skin and organs all night long, 2 liters at a time—all the while hoping he could get through the night without its beeping alarms. All the while hoping he wouldn’t accidentally pull on his dialysis catheter in what uninterrupted sleep he would get.
Big brother changed his mind and decided that baby brother waiting another 5 years or so for a dead person's kidney was not fine. He decided to give one of his. That was about 4 years ago.
This World Kidney Day, much attention will be focused on prevention and early detection of kidney disease—and this is good. But I can't help but think that if a little attention went to making more people aware of what the 100,000 people with end-stage kidney disease healthy enough for a kidney transplant in the United States alone are going through every day and that 13 of them will die every day waiting because fewer than 12,000 deceased donor kidneys will be available all year long—then maybe more than 5,000 living and breathing people a year would give a kidney too.