Teresa Atkinson was told she wouldn’t live past 40.
Diagnosed with chronic kidney disease, she has gone past that grim expiry date. While her case is an impressive one, time remains a big factor.
“The Achilles heel of dialysis is access (to the blood) and I’m going to lose access here in a few years. If I don’t get a transplant, I won’t last,” Atkinson said.
She is one of thousands that the Kidney Foundation estimates that live in the Penticton region suffering from chronic kidney disease, and one of 36 who are in need of a kidney transplant.
Atkinson has been living with the disease for 30 years and will be sharing her story along with members of The Kidney Foundation of Canada who are hosting the Penticton Community Conversation on Nov. 18 at the Penticton Health Centre on Carmi Avenue to understand why registered donor numbers are low.
According to the Kidney Foundation’s research, 95 per cent of British Columbians support the idea of donating a kidney to someone in need, but only 19 per cent are actually registered on the organ donor registry.
“The Kidney Foundation is looking to get peoples advice on why is that the case,” said Karen Philp, executive director of the B.C. branch.
They believe awareness is a crucial issue. Many think they are registered on their driver’s licenses, which is no longer the case. Registration is now indicated through the B.C. Services Card.
“That would be fine if they gave you a sticker to put on it. It’s your choice whether you do it or not, but they don’t acknowledge it in any way that you are registered and I think that’s one of our problems,” Atkinson said.
The discussions with the public, patients and medical experts are taking place in 12 different communities in B.C. Those attending will have an opportunity to provide input and feedback on what they think are the barriers for people from Penticton when it comes to organ donor registration.
The discussion will also focus on the challenges of people looking for a kidney transplant and explore what factors inhibit them from attaining a transplant. Currently, 400 people are awaiting transplant throughout B.C., many of whom will die waiting, said Philp.
Some current barriers include covering the costs of a transplant from a deceased donor. There is financial support for those getting a transplant from a living donor, but for a deceased donor there is nothing to offset the costs.
“There have been people who have said no to a transplant because they can’t afford it,” Philp said.
One solution put forward has been to create a living donor registry. Donor numbers need to be high, said Philp, due to the variety of factors that make it complicated to find a match.
“For every 100 people who register on the organ donor registry, one kidney transplant may happen,” Philp said. “We need more British Columbians to register.”
After completing the discussions the Kidney Foundation will put forward recommendations to the foundation, the government and the public at large. The report is planned to be released to the public in February as part of the lead up to the upcoming B.C. Consensus Summit on Organ Donation and Kidney Transplants currently scheduled for May.
Members of the public can learn more and register by calling 604-736-9775 or visiting the Foundation’s website at www.kidney.bc.ca