A Simcoe, Ontario, woman diagnosed with a moderately common form of kidney disease is hoping to avoid dialysis and a long waiting list by actively searching for an organ donor through social media.
Christina Mayer characterizes her appeal as a “preemptive look” for a match in an effort to preserve her quality of life amid an inevitable decline in kidney function.
“I’m not completely in kidney failure yet, but I’m really trying to avoid dialysis,” Mayer explained. 900 chml’s good morning hamilton,
“Dialysis has an impact on your quality of life and I’m just trying to maintain my quality of life.”
Of the 1,300 people on the province’s transplant waiting list, about 900 are looking for a kidney through a deceased or living donor, according to the Trillium Gift of Life Network, which is responsible for donation services in Ontario.
Meyer’s idea to find kidneys online was inspired by PKD Foundation of Canada Summit, which suggested that “your kidney should find you on social media.”
“It was appealing to try and get this out there and make people aware. … So I just decided to do that,” she said.
Autosomal dominant polycystic kidney disease (ADPKD), as Mayer suffered, is passed from parent to child and causes poor kidney function due to the gradual formation of cysts, which make it harder to clean the blood of toxins. Interferes with the organ’s main function of making and converting waste into urine.
Mayer currently measures her kidney function through the estimated glomerular rate (eGFR), which is done with a simple blood test that measures creatinine levels.
retired kidney specialist Kidney Foundation of Ontario President Dr Norman Muirhead says ADPKD is a common inherited form of kidney disease that causes organ failure.
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“It’s about seven percent or so of chronic kidney disease cases requiring dialysis or transplant on an annual basis in Canada,” Muirhead told Global News.
Meyer says her concern about the disease began in her late teens when her mother was in the early stages of kidney decline and had been on dialysis for about 12 years.
His mother suffered from several complications and passed away just before her 67th birthday.
Not long after, a 40-year-old mayor, who discovered that her kidneys were declining, was forced to seek treatment through an ADPKD drug called “Ginark”, which she had been taking since 2017.
She says her kidneys are currently functioning at about 20 percent, which leaves few options other than a kidney transplant from a living donor.
“It’s getting to the point where you just have to look at your treatment options, and I would really like to have a transplant instead,” Mayer said.
“From a living donor versus a deceased donor, (since) there is no waiting list.”
Muirhead says patients tolerate one or both of two forms of dialysis: peritoneal, a The process of flushing out impurities built up during the previous day every night, and hemodialysis which involves three to four hours on a filtering machine three days a week, usually in a clinic.
They estimate that a patient could make as many as 156 visits to hospital a year if they did not have their own filtering equipment at home.
“They’re both very time consuming,” Muirhead said. “It’s not the amount of time you spend at the machine that’s important, but the amount of time and energy you have to expend to get there and back home.”
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“It definitely really interferes with being able to live a normal life and hold down, for example, a full-time job.”
According to Muirhead, a living donor kidney transplant is easier than it was two decades ago, because it can now be performed via laparoscopy using smaller incisions and a camera.
“Most people are back on their feet within a few days after a transplant and are back to something remotely normal-feeling health within the first six to 12 weeks after surgery,” Muirhead said.
Of the estimated 4,100 Canadians on the organ transplant waiting list, about 77 per cent are seeking a kidney.
Potential living donors generally need to be in good health in the absence of heart disease, circulatory problems, cancer, obesity and any psychological issues.
The mayor said his campaign has lined up about half a dozen “potentially interested” candidates to test them for compatibility and eventual donations.
“So once my eGFR drops to the point where I have to start looking at treatment options like transplants, I have to do my share of testing and … see if I’m compatible with matched people.” I am,” said the mayor.
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