Ontario Renal Network | Reseau Renal de L'Ontario

Marci O

Marci O.
“If you haven’t lived with CKD, you have no idea what it is really like to face this disease. That’s why it is so important to include patients and their families in planning kidney care services.” 

If living with chronic kidney disease is a journey, Marci O. has visited many of the major stops along the way. An undetected birth defect caused her kidneys to fail when she was just 16 years old. After a short period on hemodialysis, she received a kidney transplant. Then, 7 years ago, despite the outward appearance of excellent health, her kidney function started to decline. “The anti-rejection drugs probably caused fibrosis to develop on the kidney. My doctor predicted almost to the day how long my kidney would last,” says Marci.

When that day came in the fall of 2013, Marci was prepared. “My team gave me a lot of information about my treatment options and advice about what they thought would work best for me.” Wanting the greatest independence possible, she opted to start nocturnal peritoneal dialysis. Even though she prefers to dialyze at home, she appreciates the support readily available from her renal team. “I’m lucky because transplant and dialysis services are all offered at the same clinic, so my care providers always stay the same. I knew my dialysis nurse even before I started dialysis, and now I can text her if I have any questions.”

Recognizing that not everyone with CKD is as fortunate as she has been, Marci volunteered to be a patient advisor on the development of the second Ontario Renal Plan. “Patients know better than anyone else what’s out there and what isn’t; what it’s like to be on dialysis or to wait for a transplant. I hope that by including the patient’s point of view in the Ontario Renal Plan, we will make things easier for future patients.”