A Saskatchewan man diagnosed with renal kidney failure spent a year believing he was on a transplant list when he actually wasn’t.
Keil Elles, a 23-year-old from near Kelliher, Sask. used to love quadding, horseback riding and taking his nieces and nephews swimming at the lake. However, in April of 2022, blood tests revealed his kidneys were failing due to type-1 diabetes he’s lived with since a young age.
“Now it’s just nothing; I can’t do much. When I do feel good, that’s one day a week,” he told CTV News.
“It’s gone really downhill.”
At the outset of his diagnosis, Elles says he was told that he would be placed on a list to receive a new kidney.
However, at a recent appointment, his family said they were shocked to learn his doctors never placed Elles’ name on a registry so he would be in line to get a new kidney.
“How can this happen and [how] was he forgot in the system?” Keil’s mother Linda Elles said.
Meanwhile, over the past year, Elles says his condition has been growing worse.
Since his diagnosis, Elles has been travelling from his family farm to Regina weekly for doctors’ appointments while also undergoing at-home dialysis.
Four times a day, he sits at the kitchen table for two hours connected to two litres of fluid that filters toxins out of his blood.
Four times per day, for two hours at a time, Keil sits at his kitchen table for dialysis. (Donovan Maess/CTV News)
“[Everyday] starts with crazy leg pain in the morning,” he said. “It feels like someone is beating your calves with a baseball bat.”
Elles’ feet and legs are swollen enough his shoes no longer fit and simple tasks like getting dressed are difficult.
“I wear slippers everywhere, even in the snow,” he said.
In an email to CTV News, the Saskatchewan Health Authority (SHA) said “the Organ Transplant Program process, in particular for kidney transplants, is initiated when the referral form is sent in by the patient’s general nephrologist.”
The SHA went on to say “once received, it is reviewed by the transplant team, which includes a transplant nephrologist.”
The family says Elles never had a transplant team.
“We went a whole year believing [he was on the list],” his mother said. “We didn’t question because we had trust in the doctors and the health system.”
CTV News has reached out to the nephrologist assigned to Elles but has not yet received a response.
However, in response to the claims, the SHA said it “regrets any undue delay to patient care within the health system. While administrative processes and procedures are in place to help ensure timely patient care, human error and other factors can result in care delays on rare occasions.”
The health authority would not comment further, citing patient privacy concerns but recommended patients follow up with health providers on the status of upcoming appointments, procedures and treatments for confirmation and accuracy.
Now Elles will be assessed for his eligibility for a transplant. If eligible, he will then be placed on a waitlist.
“Acceptance is based on best-practice criteria set out by the established guidelines,” the SHA said.
The SHA’s website says the average wait for a kidney transplant in Saskatchewan is 2.8 years. The family says they have been told it can take up to five years.
“There were obviously some errors there,” Elles said. “I just wish it would’ve been done so I can get better before I get worse. I wasted a year.”
According to the SHA, at the end of January, 40 patients were awaiting a kidney transplant in the province.
Elles said he and his family are spending upwards of $1,000 per week for travel to Regina including gas, food and accommodations.
Additionally, he picks up iron infusions at a pharmacy in Melville, once a week.
“I sold my Ski-Doo and quad because I need money to go in for appointments and I can’t ride them anymore,” he said.
Linda said the impact on the rest of the family is also taking its toll.
“It’s not Keil’s fault,” she said. “Hotels and food aren’t covered. I try to pick up jobs here and there but I’m the one that helps him so it’s hard.”
On top of the costs, the pain he feels has forced him to limit work and time with friends.
“[I’m] missing out on all the fun stuff you do as a farm kid,” he said.
“He’s a young guy,” his mother added. “He should be out doing and enjoying stuff, but he can’t.”
The family said Elles has started the process of his evaluation for a transplant.
“I have to be healthier than I am right now to get on it,” he said. “Lots of bloodwork and testing.”
His family can’t fathom the emotions they’ll feel the day he finally gets his new kidney.
“If he ever gets a kidney it will be a miracle,” his mother said. “It’ll be like I won the lottery. We’ll have a big party.”
“It’ll be amazing,” said Elles . “I’d be speechless. My hair would fall out.”
Recently, Elles got a new machine that will allow him to do his dialysis at night in bed. He and his family will need to renovate his bedroom for the machine to be usable, including diverting plumbing.
For now, he waits.
“It would be nice to feel healthy again,” he said. “Having no pain when I’m walking would fix all my problems.”
“It’s heart-breaking,” his mother said. “I would do anything to take his pain away. I just wish there was more help out there.”
The Elles family has set up a GoFundMe to help pay for some expenses.