PKD runs in my my mom’s side of the family. It has been devastating to us. My grandfather died from a major stroke caused by PKD. My mom had a major stroke that left her a vegetable at age 35 from PKD. She died at 50. My older sister recently died from a major stroke at age 56.
I had scoliosis surgery when I was 14. I had a kidney transplant in 2009. Fought rejection. I had emergency diverticulitis surgery in 2015 resulting in an ostomy. I also had a clostridium difficile (C Diff) transfer in 2015 from my wife. In addition, I’ve had four different hernia surgeries over many years.
I also had emergency surgery to cut a hole in my peritoneal cavity to allow ascites/fluid to flow from my new kidney into the cavity for absorption, but it hasn’t worked, so doctors regularly must drain on average 5 liters of fluid from me. No one in Portland, OR, or the Mayo clinics in Minnesota and Arizona, know why. I ended up having a double nephrectomy in 2016. I was in the hospital for a week with a fever of 104 degrees.
My ascites continues to this day, as well as my migraines. My wife was treated in 2014 with radiation for a brain tumor. Our daughter, Kaley, had surgery at age 5 for a brain cyst. She just recently was diagnosed with PKD at 13. We also did genetic DNA testing and she is the first person ever to be found with an extra “T” gene in her sequencing. Doctors do not know exactly what that means to her and her future. Please pray.
It has been a very difficult road for us, but we are also determined to help find a cure for PKD. If we all do our part to build awareness, and raise money, we will END PKD. Please consider becoming an organ donor and encourage everyone you know!