My father, Will, and his two brothers had PKD. Will died in 1980 when I was only 17, and I have very few memories of him other than him being sick. He and my mother, Audra, had four children.
My oldest brother, Mark, does not have PKD. My other brother, Walkin’ Jim Stoltz, had PKD and lost his battle with it in 2010. He received a transplant in 2004 and was able to have a few healthy years but fought two different types of cancer on top of PKD. My sister Sue has PKD and had a transplant in 2004, too. Her kidney is doing wonderfully, but she has many other health issues.
Then there’s me, the baby in the family. I have PKD and was blessed to make it into my 50’s before my kidneys failed. It may seem like it didn’t really have an impact on my life then, until recently. However, this disease had an impact on me at a very young age. I spent hours in the hospital waiting room, my dad constantly in and out of the hospital. Much of my younger years revolved around his illness. The other impact is that I had to learn to deal with loss at a very young age. When you lose a parent, even in your teens, it profoundly affects who you are and how you look at things.
As my kidneys failed, they also grew and caused pain. I went in to have the cysts slit open to make more room in my abdomen. While they were doing that, they cut my renal artery, thus starting my journey toward transplantation. It was very serious and they started me on dialysis right away. I was in the hospital/rehab for a month.
The most amazing thing was that my friends and family started getting tested to be my kidney donor. Eight months later, I received a call in the middle of the night that they had a perfect match for me. I was so shocked and so excited. Over night my life changed and I felt so much better. My deceased donor, Tony, is my hero. I live on with thoughts of him in my heart and I am motivated to live my best life in his memory.
Last November I had my native kidneys removed. I was finally going to be pain free! After several setbacks with infection, an ulcer from the daily pills and being in the hospital again for a month, I am on my way to gaining my health back.
Being on track toward recovery hasn’t diminished the impact this terrible disease can have, though. While my daughters were being tested to see if they could give me a kidney, both of them were diagnosed with PKD. My son has not been tested yet, and I am apprehensive to learn if he will be diagnosed, too.
Finding out your children have a chronic disease that has no treatment is life changing. I was devastated of course, but it also gave me motivation to contact the PKD Foundation and join in the fight to end PKD.