Before my diagnosis, I was a healthy 20-year-old. My only problems were balancing college and part-time work. I’d just finished my last semester of college when I began feeling ill. A serious kidney infection had been brewing and I had no idea.
I checked myself into the emergency department two days before graduation. The radiologist told me about the infection and then about an incidental finding of multiple cysts on my kidneys. His exact words were, “too many to count.” Seeing as I have no family history of any genetic kidney disease, I thought that it would be a relatively benign case.
The first thing that changed was limits to the types of medications I can take (i.e.: no Ibuprofen). Next, was the addition of a blood pressure medication at age 23. Then the premature birth of my daughter, caused by complications of PKD, at 25. Finally at 26, I received the diagnosis of rapidly progressing ADPKD and polycystic liver disease.
Most days, I can handle the fact that I’m actively working against my body. I take a regimen of medications. I drink over a gallon of water daily. I follow a low-sodium diet. And I keep up with regular monitoring through blood draws and imaging. There are days I miss salty snacks and heavily processed foods. There are also days where the thought of my eventual transplant looms in my mind. It’s days like those that led me to the PKD Foundation site. Reading other’s stories and having a local PKD Community helps me know I’m not actually alone.