By Jim Myers, AAKP BOD/Ambassador
How does one normally become aware of Polycystic Kidney Disease? In my case, I became aware through my Father. I’m 62 now. This is about the same age my Dad was when he first told me he had PKD. He had been to the Mayo Clinic for a checkup, and he reported to me that he had “kidney disease.” He went on, “let me put it this way, the doctors said I won’t live to be a hundred.”
In the years that followed he became dizzy, had difficulty standing and maintaining his balance. In a very short time, he was on dialysis. By 1983, he was gone. He spent the last month of his life in the hospital, St. Margaret’s in Hammond, Indiana. He died a slow, lingering death of congestive heart failure and uremic poisoning all secondary to PKD. I learned that as a child, his entire family had been quarantined as a result of small pox, and almost all of my family on my Father’s side had died as a result of what was originally termed as “environmental PKD,” or due to a scarring of the kidneys that later turned into cysts and infection.
One thing about this, I had a cousin Rich, who did not live with this group, and he too died from PKD related causes. He was in his 30’s when he died, he had just married and this came as quite a shock to the rest of us. They termed this, “Childhood PKD” and told the rest of us it was an aberration.
When my Dad told of us diagnosis, I was in law school, when he died I was already working my second attorney job. Very shortly after his death, I went into the hospital in Valparaiso, Indiana, what was then called Porter Memorial, with chest pains. My PCP told me that my cysts were so large they could be seen on a plain x-ray. So much for the environmental/childhood theories. To say this came as a blow, was an understatement. I watch my Dad die and I felt my future was cast in cement.
I did a lot of things wrong after that, but more importantly were the things I did that were right. I not had the local nephrologists my Dad had in NW Indiana, but also retained nephrologists at IU Health at Indiana University. I was put on a renal diet right way. I was given high blood pressure medication. I saw them every six months, where they did a urine test and a blood test on every visit. I was able to put dialysis for a long time, over 30 years. I was horribly frightened of dialysis because of what I saw when I sat with my Dad. But because I had followed medical advice and had excellent care, my dialysis was not unreasonably difficult.
Others were not so lucky. I became a kidney advocate and this is what I plan to do the rest of my life. I like helping others , especially my friends with PKD!
On April 27, 2016, I became the first Myers ever to have a kidney transplant at my lucky place, IU Health in Indianapolis.
For PKD Awareness Day, I want to remind everyone to get tested. It is a simple and inexpensive blood and urine test that takes no time at all, but can make a world of difference. If PKD runs in your family, like mine, don’t hesitate to get checked out. Be PKD aware!