Happy National PKD Awareness Day

I have a wristband. It’s one of those silicone rubber types, in a teal green color, and in six letters it delivers a simple message: END PKD.

When I wear my wristband, no one asks about it. It is overlooked, much like the disease it represents, a genetic disorder that is one of the four leading causes of kidney failure in the nation.

end_pkdPolycystic kidney disease, or PKD, affects millions of people worldwide. My wife suffers from it. Cysts filled her kidneys to the point where they became more than twice their normal size and began to cease functioning.

There is no cure for PKD. The outcome is always the same: sooner or later, the sufferer reaches end stage renal failure. At that point, the only options are dialysis or an organ transplant.

Last year, my wife, who is in her mid-forties, received the news that her kidneys were failing. She was put on the national organ transplant waitlist but we both knew that waiting for a donor to come forward was a long shot. The idea of spending years dependent on dialysis seemed both unpleasant and medically less than ideal. A living kidney donation, we were told, was the best alternative. But whose kidney?

In February of this year, I decided to offer myself as a potential donor. If I said it was an easy decision to make, I’d be lying, since there were many factors to consider. We do not share the same blood type and we are obviously unrelated, so I thought it might not work out. But making the offer and getting screened was a small act that felt like the right thing to do.

As it turned out, the screening showed I was a suitable match. On August 15, we had the transplant surgery. I came to believe it to be a way to move forward and do something positive for her, for our children, and for our families.

As you read this, my kidney is working in my wife in place of the ones that PKD destroyed. However, this does not end PKD for her or for the population. Much has yet to be done to understand how the disease works. Current research holds out hope that, by reducing cyst growth with appropriate medication, those with the disease can delay end stage renal failure and live with their own kidneys for as long as possible.

Today is National Polycystic Kidney Disease Awareness Day. I am wearing my wristband both as a symbol of where we’ve been and as a reminder of what we still need to do. If you see me, ask me about it. I’ll be happy to tell you what it means.

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