Ken’s Story

Polycystic kidney disease touches an entire family

by Paul St. Germain

Janet and Ken know a thing or two about kidney disease. It has touched several members of their family. Too many, in fact.

q Ken and Janet B oth of Ken’s sisters had renal health issues. The younger of the two had a kidney removed when she was just eight years old and is now on hemodialysis as her other kidney is failing. His eldest sister had a kidney removed in her 30s and developed kidney failure also. Sadly, she recently passed away. Both of Ken’s parents also suffered from kidney disease. However, it was only upon his own diagnosis that Ken became aware of the hereditary nature of polycystic kidney disease (PKD).

“He was working very long hours at the time,” recalls Ken’s wife Janet, “so he initially thought that was the cause of his fatigue.” It was only when he experienced terribly sharp back pain and drove himself to the hospital that he discovered what was happening. In addition to the PKD diagnosis, Ken found out that his high blood pressure was the result of his kidney disease.

In 2009, Ken began peritoneal dialysis and was put on the transplant waitlist.

“Getting the diagnosis was a lot to process,” recalls Janet. “There were many unknowns and a lot of specialists to see.”

Staying positive and maintaining a sense of humour helped a great deal. The patient handbook entitled Living with Kidney Failure provided by The Kidney Foundation was another tremendous source of aid to Ken and Janet. In it they found answers to many of their questions and tools that helped guide them on their journey.

Ken and Janet also tapped into the Foundation’s Peer Support services to help them through. The program connects people who have received a kidney disease diagnosis, and their families, with a volunteer who has lived through a similar experience and who can provide emotional support and share resources.

In July 2012, Ken received a kidney transplant. Unfortunately, that wasn’t the end of his health concerns. Recently, Ken had to have his native kidneys removed following a cancer diagnosis. Ken and Janet are also concerned about their eldest daughter’s health as she has also developed kidney stones.

Despite the many hurdles, Ken is very thankful to the organ donor who provided him with a second lease on life. “Without it, I might not have been around to see my newborn granddaughter,” he says with gratitude. 