Her kidneys are failing. Why this woman isn't counting on Ontario's organ wait list

In an effort to avoid dialysis and the province's organ wait list, a woman from Simcoe, Ont., has taken her search for a living kidney donor to social media.

"My nephrologist said, 'Don't put your eggs all in one basket,'" said Christina Meyer, 50, whose kidneys are currently operating at about 20 per cent of normal ability. "I'm trying to avoid dialysis."

Meyer moved with her husband and daughter from Woodstock, Ont., in the last year, but her medical team is still based at the London Health Sciences Centre (LHSC), where doctors did 111 kidney transplants in 2022. Twenty-seven of them were from living donors.

"[My kidneys] started to fail around 40 and it's just been slowly dropping ever since," said Meyer.

The lion's share of kidney transplants in Canada are from deceased donors.

However, transplants using kidneys from living donors usually last longer, and can reduce or prevent the patient's need for dialysis, according to Canadian Blood Services.

The more people you get to step up, the more likely I'm going to find that perfect match.- Christina Meyer

At 18, Meyer was diagnosed with autosomal dominant polycystic kidney disease (ADPKD), a genetic disorder that her mother succumbed to at 67 after years of dialysis.

Earlier this month, Meyer posted on Facebook about her disease and appealed to anyone who might be willing to donate a kidney.

"The more people you get to step up and be a donor, the more likely I'm going to find that perfect match," she said.

Meyer is not currently on Ontario's organ transplant wait list because her estimated glomerular filtration rate (eGFR) —in other words, how well her kidneys are filtering toxins/waste from your blood — has not dropped below the threshold, but she anticipates it won't be long before she'll need some kind of treatment.

Thousands on wait list

According to Ontario's Trillium Gift of Life Network, 1,063 people in Ontario were waiting for a kidney transplant in the province in 2021. Across the country, the Canadian Institute for Health Information reports, 3,060 people were waiting for a kidney that year, when a total of 105 people died while waiting for a transplant.

"Decisions about a patient's placement on the wait list for an organ transplant (including kidneys) are based on how urgently the transplant is needed coupled with how long that patient has been on the wait list," a spokesperson with Ontario Health said in an email to CBC News. 

"Patients who are clinically in most urgent need of a transplant would be prioritized." 

Two people have already reached out to Meyer and are interested in finding out if they'd be a match for her — various blood tests have to be conducted to determine that.

Both Meyer's sister and husband have also begun making inquiries to see if they'd be matches.

"It's a tricky thing in the system because we certainly don't want people to feel like their health depends on the popularity of a social media outreach," said Matthew Weiss, medical director for donation at Transplant Québec and executive committee member with the Canadian Donation and Transplantation Research Program.

"That being said, we wouldn't want to deny someone the possibility to find a donor by going through channels such as a public appeal," said Weiss.

Meyer is justified in trying to find a living donor, he said.

"If you can avoid dialysis, not only are you making a massive difference in the quality of that person's life, but you are saving a tonne of money."

Weiss said the health-care system is spared $50,000 a year for every person kept off dialysis.

Here's Christina Myer's social media post:

As in many areas of health care, the COVID-19 pandemic has added pressures to managing organ donations across Canada — especially if multiple donors become available at once, Weiss said.

"Most organ donation co-ordinators who do a lot of the work, most of those come from a nursing background, and as everyone knows, there's a shortage of nurses everywhere, and so trying to recruit nurses to any field is a challenge," he said.

"It has definitely worsened our capacities."