I went undiagnosed my whole life until I started checking my health records. I felt as if my body was breaking down. My health records showed my kidney function had declined—it had been declining for years. No doctor ever told me that something was wrong with my kidneys. I realized something was wrong.
I switched providers and became persistent that a nephrologist see me. I waited five months to be scanned for PKD, finally receiving the diagnosis at 37 years old. I was at stage 3b. Within 1.5 years later, I’m now in stage 4 and started taking tolvaptan.
No one in my family has PKD. I’m not married, and I don’t have any children. I’m the first one to have it. I have a hernia, an aneurysm, liver cysts, ovarian cysts, and high blood pressure associated with PKD. I’m angry that I wasn’t diagnosed sooner. Now I’m preparing for dialysis and a kidney transplant.