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Northern Alberta Kidney Foundation Branch Launches Program to Enhance Patient Education and Increase Living Organ Donation.

Life for the 2600 Albertans whose kidneys have failed can be intricate and frustrating as they adjust to life on dialysis - a lifesaving treatment that filters toxins and excess water from their body. Most patients receive in-centre hemodialysis treatment, which means they are required to attend a hospital 3 times a week for a minimum of 4 hours.  Once you account for travel and set-up times, many patients are spending a minimum of 12-18 hours per week getting treatment.

“In terms of time commitment, dialysis becomes a part-time job.  Many are unable to work, which create financial stress, patients are introduced to new medicines, new diets, fluid restrictions, and there is loss of freedom.” says Flavia Robles, Executive Director of the Kidney Foundation, Northern Alberta & the Territories Branch. “The Kidney Foundation’s work is premised on supporting these patients and we hear the heartbreaking reality of kidney disease, renal failure, and dialysis on a daily basis.”

Recognizing additional supports were needed for patients, the Kidney Foundation has proudly partnered with Alberta Health Services and is actively collaborating with the University of Alberta’s medical staff to offer Kidney One on One, a program designed to empower patients, bridge knowledge gaps in the transplant process, and allow patients to take control of their health.

Kidney One on One is a patient driven program which connects kidney patients with kidney transplant recipients, living kidney donors, caregivers and dialysis patients with the goal of improving patient education regarding transplantation and modality choice.

“We are encouraging patients to ask their health care team questions. Am I on the donor list?  What are the next steps for my living donor? If I’m not medically eligible for a transplant, what can I do to get there” says Robles. “The unfortunate reality is some patients may not qualify or be medically fit to receive a transplant while others may actively choose not to be put on the transplant list, but the goal of this program is to ensure patients know their options and the next steps to get there.”

Transplantation, especially from a living donor, is the most clinically and cost-effective treatment for kidney failure, but barriers still exist to increase living donation.

“When I was put on dialysis, it was unexpected. I went to emergency, was diagnosed, and was on dialysis within 24 hours. I’m referred to as a crash-start but from day one, my family step up and got tested. Still, it took almost 2 years for me to get my transplant” notes a kidney transplant recipient and a kidney one on one volunteer. “Years later I found out that when you have a living donor, it usually takes 9-12 months to get a transplant. But I didn’t know what the process was, I didn’t know what question to ask or who to ask so I didn’t question anything” he continues “I’m sure there was a valid reason for the delay, but by joining this program, my goal is to be a resource to someone and encourage patients to be their own advocate so delays don’t happen.”
Kidney One on One team members will engage dialysis patients by sharing personal and lived experiences about their transplant experience, kidney journey, and answer questions from a non-clinical perspective. This program is meant to support kidney patients, so they are informed, confident, and in control of their decisions.
Dr. Branko Braam, Interim Division Director for nephrology and Kidney Health Translational Research Chair at the University of Alberta, says “The Kidney Foundation One on One initiative will help our patients to become more empowered to navigate our complex healthcare system. It will help us all to build a stronger collaborative team approach for care delivery. Straight out wonderful, Kidney Foundation, great initiative!”

“The average wait time for a deceased donor is nearly 4 years whereas the average wait time for a living donation is 9 - 12 months. We need to get these patients out of a dialysis chair, into a surgery room, and off living a healthy life” continues Robles “but the first step is to educate patients and optimize communication about transplantation among all involved.”

Over the past 10 years, an average of 56 living kidney transplants and 78 deceased donor transplants are performed per year in Alberta. As of December 31, 2017, 443 Albertans were waiting for a kidney transplant and during 2017, 96 patients withdrew from the transplant list (61) or died (35) while waiting for a kidney transplant. Throughout Canada 4,473 remain on a transplant waitlist and that number does not include those that have fallen off the list because they became too sick to be eligible.
We will work to improve the lives of Kidney patients…. One on One.