PKD has caused my family so much hardship. Growing up, I watched my mother suffer as her health declined. She was always in so much pain, never wanting to leave the house because she was so uncomfortable. Finally, at age 41 she was put on dialysis, and she was beginning to manage her symptoms better. About a month or so later, a massive aneurysm we didn’t know about ruptured in her brain, and after nine long days in the Neuro ICU, we decided to put her on comfort care, knowing her wishes. It was the hardest thing I’ve ever had to do.
I was diagnosed at age 12. I’m now 22 years old and have felt completely alone. My mother is gone, and I am left to devour any research I can to try to avoid the same fate. Before her passing, I didn’t even know aneurysm development was common in patients with PKD. So far my kidneys have caused me only a little trouble (I’ve had a few cyst bursts, which are painful but manageable). My biggest concern right now is my high blood pressure, which I will hopefully be able to control with natural methods before resorting to a lifetime of medications. I’m so happy to have found a community here and look forward to using my voice and helping bring awareness to PKD. Together we will find a cure!