I inherited my PKD from my father’s side of the family. My grandfather died of kidney failure in his late 30’s when my father was about 19 years old. My father was diagnosed young, and his kidneys failed at age 38 when he began hemodialysis. Growing up, my sisters and I knew all about PKD and that we had a chance of inheriting the disease. My father died at age 49 after a brain aneurysm burst; I was only 21 years.
A year later, after my mother also died (from a cancerous brain tumor), my younger sister was diagnosed with PKD. At that point, I saw a nephrologist to be evaluated, even though I had no symptoms yet. Getting diagnosed early helped me to learn more about the disease and how to slow down its progression before having to cope with declining function. I grew up feeling like home hemodialysis was a way of life for our family so it’s probably less frightening for me than people who didn’t see how it can be okay. My younger sister died at age 43, so I’m the only one left in our family with PKD. I’ve outlived the others—I’m 54 years old and in stage 4.
I see how medical science has vastly improved with each generation, and I’m proud to have been in two rounds of the tolvaptan trials that brought this first treatment to PKD patients. Hopefully, there will be a cure.