Woman looking online for a kidney donor

Desperate in the face of long delays in getting a kidney transplant, the 36-year-old Trifluvienne decided to try to find a living donor on social networks.

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“I’m looking for a college online. Because if I have to wait another 4 years for a transplant, and then a year to recover, I’ll be back in business after 5 years. I’ll try to start a family at 41, that’s too far,” breathes Judith Belair Kyle, her cat Oscar in her lap.

The 30-year-old has suffered for several years from Polycystic Kidney Disease (PRD), a genetic disorder that causes cysts in the kidneys. They multiply and enlarge, so that a normal kidney – the size of a fist – reaches the size of a football.

Since her organs can no longer filter her blood normally, the Trois-Rivieres woman constantly suffers from nausea, trouble sleeping, stomach aches and brain fog, which prevents her from concentrating. She is no longer able to work and finds it difficult to walk for more than 15 minutes.

She has been hanging on the list of cadaveric donors since she began suffering from end stage kidney failure in October 2021. Her kidneys are now working at just 13% of their capacity.

long waiting

But despite her symptoms, the stabilization of her condition puts her at the bottom of the waiting list, as she’s not yet bad enough to start dialysis, a treatment that consists of filtering her blood through a machine for 4 to 5 hours, several times a week.

“Those who pass by need it more than me because they depend on a machine to live. I see the list growing, and I keep getting low. But it is my life that passes before my eyes while I wait,” she laments softly.

In 2021, kidney transplant recipients waited an average of 544 days on the list, according to data from Transplant Quebec. He is also the most requested member.

Luisa Miniaci-Di Leo, Montreal District Coordinator for Canada’s PRM Foundation, knows patients who have been waiting 5 years to get a kidney.

I know a woman who lived 3 years without any kidney, because the doctors had to remove her due to illness. She was undergoing dialysis six times a week. What kind of life is this? ‘, she commented.

Judith Beller-Kyle’s only other choice: get a live transplant from a voluntary donor. After failing to find a potential kidney donation in her entourage, she turned to the Internet.

“When I went looking for a college on the internet…,” she didn’t believe it herself. The current organ shortage in Quebec is forcing me to search for a donor via social media. »

presumed consent

Meanwhile, she uses what little energy she has left to fight for the county to follow in Nova Scotia’s footsteps by offering presumed consent to organ donation.

A petition has also been submitted to the National Assembly to substantiate the presumed consent. In this way, it is those who refuse to donate their organs who will have to report their refusal.

“It’s an easy change that can have a big impact,” stresses Mme Blair Kyle, who wanted to share her story as part of National Organ and Tissue Donation Awareness Week.

open dialog

However, it will take more than just a change in the law to see a real impact in the number of donors, because families still have the last word.s Matthew Weiss, medical director of organ donation at Transplant Québec.

In 2021, 26% of families would have refused to have organs removed, according to data from Transplant Quebec.

But he believes that opening up the dialogue has had an impact on the number of donors referred to in Nova Scotia.

References have increased a lot. And that’s fine, because you can’t get donors if they aren’t referred. But if we want to prevent families from being different, the most important thing is to talk about it. He concludes that the reason families refuse is because they don’t know.

Organ donation in 2021

  • 724 deceased Referred to Transplant Québec for potential organ donations
  • 144 At least one of them donated
  • 505 members transplant in total
  • 888 The patients Waiting for a transplant in Quebec
  • 620 patients waiting for college
  • 26% of families refused to donate*
  • 1 body Can save up to 8 lives

* Donation may not be successful due to medical reasons

Source: Quebec transplant

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