Ontario Renal Network | Reseau Renal de L'Ontario
 

Becky S


 
Becky S.
“[My nurse] suggested home hemodialysis. I like taking control of my life again, and I love that I can have three days in a row off dialysis.” 

Becky S. had more than 30 years’ advance warning that her kidneys were likely going to fail. Unfortunately, when she was diagnosed with polycystic kidney disease in 1978 her doctor at the time simply advised her, “Buck up. You can’t do anything about it, so just go live your life.”

It wasn’t until she was sent to a kidney function clinic in 2008 that she finally learned about chronic kidney disease and what she needed to do to preserve her health. “At first I was very angry that I had to deal with this, that I had to change my diet, have blood tests and take time off work,” she says. “But the information I received was a real wake-up call, and the changes I made helped extend the life of my kidneys as much as possible.”

When Becky’s kidneys eventually did fail in 2010, her healthcare team helped her examine her treatment options. After several setbacks with peritoneal dialysis, which she loved because she could travel and sail, she settled into a routine with nocturnal hemodialysis, which allows her freedom from the hospital and gives her back her days. 

She is now waiting for a kidney transplant, a process she finds very frustrating. “For over a year, I didn’t know that I was even on the list; now, I don’t know where I am on the list. Better communication between the transplant team and the patient should be addressed.”

As a patient advisor on the Ontario Renal Plan II, Becky hopes to see people receive more information when they are diagnosed with CKD so that they can take steps to prolong their kidney function, along with more information about the transplant process. “The unknown is the worst part of this disease,” she says. “The more you know, the more control over your own health you can have.”