I am 49 years old, and I was diagnosed with PKD after our youngest of 3 children was born. I had never heard of PKD before my diagnosis. My parents don’t have, it so I mutated the gene. When our girls got older, we had them tested by ultrasounds, and it was discovered that both our daughters have PKD. Our son is 17, and he hasn’t been tested yet.

The reason I was diagnosed was because I felt bumps in my abdomen. I have polycystic liver disease as well. My liver has been huge for a long time, and people used to always assume I was pregnant. I have found that wrapping bandages around my abdomen helps with all of the hernias, so I wear them every day. I have varices in my esophagus from the internal pressure. Luckily, I don’t have a lot of cyst pain.

The most devastating part of my diagnosis of PKD was when the doctor told me that it was hereditary. I was so overwhelmed by the thought of passing PKD on to my children. I felt helpless to do anything, so I found the PKD Foundation of Canada, and started to do some fundraising. I was a Walk Coordinator in my small town for 10 years, and I met many people with PKD, and raised a lot of money with the help of my family and community.

In August of 2008, I decided to join the TEMPO drug trial, so that my children might have a treatment option some day. I took the placebo for three years, then switched to the active drug, tolvaptan. When they switched everyone to the active drug, it was obvious that I had been on the placebo. Tolvaptan makes you very thirsty, and I can never be far from a bathroom. I have adapted to that, and I am still taking tolvaptan, brand name of Jinarc. I feel that it has been helping to keep my kidneys stable, but my liver continues to grow and cause me problems.

I am a "glass half full" kind of person, and I always try to see the positive side of everything in life. I am hopeful that my children will benefit from the ongoing research and new medical advances in PKD, and will live long and happy lives.

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