The biggest challenge of living with PKD has been fatigue and nausea.

Headaches were the big thing that bothered me for a long time.  I took aspirin on a daily basis.  Thought it was okay. I had occasional kidney stones.  I had some stomach pain, but I led a normal life. 

Nausea was another issue.  I had a hard time eating a lot.  Certain foods I couldn’t digest.  I actually became a vegetarian for about ten years, and started to lose more weight and decided that I needed to eat meat and get that back into my diet and actually one of my doctors recommended that I go back on regular foods, and I did, and it did make me feel better, but I had to watch my protein intake.

I don’t personally feel like PKD slowed my lifestyle down.  I knew I had the disease.  I watched what I ate.  I tried to get rest, be prepared. I really, other than fatigue was my biggest struggle with the disease over a lot of years just really did not make me feel well every day. 

When I found out I had PKD, there was a lot of questions. Diet was a big one, changing my diet, watching potassium intake, phosphorus intake.

There’s a couple other items that I had to watch for, but there was really no information out in the late 1990s to 2000.

Doctors gave me some information, but it wasn’t quite what they tell you today.  There’s far more information with the internet.  It opens so many more avenues for people to find diets, find proper—how to live with PKD.