My father was diagnosed with PKD in the 1990s when the only thing we knew about PKD was cysts on kidneys, dialysis, kidney transplant, that it was hereditary and that it affected many organs in the body. My dad lost his battle with PKD in 2001 after being on dialysis for five years.
One of the things we did not know was that aneurysms could occur in patients with PKD. In November 2016, my brother passed away from a massive brain hemorrhage at the age of 59. When he was brought to the hospital, he was in total renal failure, and there was nothing that could save him. My brother’s death was not in vain, he saved a young man with the donation of his liver, and he also saved mine.
Exactly six months after my brother’s death, I was diagnosed with a 6mm brain aneurysm. On July 26, 2017, I had brain surgery and returned to work 3 1/2 weeks later. Exactly one year after my brain surgery, I was diagnosed with PKD. I was not shocked by my test results, so I decided from that day on, I would do everything in my power to raise awareness for PKD.
I share my family’s story of heartbreak but also how to live with PKD and how positivity of the mind, persistence to never give up, and prayer play a key role in living with a disease where there is no cure. I decided to share my story today because the last 24 hours have been the most grueling hours I’ve ever had to stay calm and positive, not for me but for my daughter. We were waiting for her test results. She is PKD free and brain aneurysm free. My son is next.