Some dialysis patients in northwestern Ontario travel hours and live far from home for life-saving treatment | CBC News

After over 40 years of living out of motel rooms, crisscrossing Canadian highways as a transport truck driver, Wayne Cullingham was looking forward to spending his retirement surrounded by loved ones at home in Kenora, Ont.

Instead, he received unpleasant news on Valentine’s Day.

Cullingham had been diagnosed years ago with polycystic kidney disease — a genetic disorder that causes fluid-filled cysts to grow in one’s kidneys. Now, his kidneys are rapidly failing.

He and his wife had to pack their bags, uproot their lives and move 500 kilometres east to Thunder Bay to begin dialysis — a life-saving treatment to help filter waste and excess fluids from the blood. He had two days to find a place to live and make all the necessary arrangements.

“I just don’t know why we gotta be six hours from home. That’s the punchline here. It’s sad,” he told CBC News.

Cullingham, 71, is one of 14 people forced to travel to Thunder Bay while waiting for a treatment spot to open up at a regional hospital closer to home. He said he has no idea how long he could be in Thunder Bay.

“I don’t know where we go from here, but she’s a long road. We need help … help to get home,” Cullingham added, holding back tears.

According to the Canadian Institute for Health Information (CIHI), in 2021, more than 48,000 Canadians were living with end-stage kidney disease, with 29,835 people receiving dialysis.

When it comes to northwestern Ontario — an area roughly the size of France — there are several hospitals but only four offer dialysis. Of those, three are currently at capacity, with no spaces available for new patients.

That means anyone who needs dialysis — from the Ontario-Manitoba border in the west, to White River, Ont., in the east, to Hudson’s Bay in the north — must relocate to Thunder Bay for the life-saving treatment.

The emotional and financial costs

Carol Davis, a 76-year-old single woman from the Kenora area who is living with diabetes, has already been waiting for nine months.

She has an active social life back home, with a close circle of friends who first met in kindergarten and is a member of the tenants’ association executive at her seniors’ apartment block.

But Davis has to be in Thunder Bay three times for 3½ hours of dialysis treatment every week. She tries to get home as often as possible, making the 1,000-kilometre round-trip drive in a matter of just days so she can be with her support network.

It carries a heavy emotional and financial burden.

Davis pulled out an envelope filled with receipts and a notebook with a list of carefully noted expenses.

“Expense wise, from the 17th of July to the end of December, just for related things to me living here, I’ve paid over $17,000 on my Visa.”

That includes costs related to her required relocation to Thunder Bay, things like gas, car maintenance and rent on her second apartment, Davis said.

The provincial government offers the Northern Health Travel Grant, which provides money for travel and accommodations for residents in northern Ontario who have to go long distances to access medical specialist services. But Davis and Cullingham both say the funding they get doesn’t come close to covering the actual costs they’re incurring.

Please get us home to our own community for treatment so we can live the life we were supposed to live.– Carol Davis, asking the Ontario government for help to receive dialysis treatment closer to her home near Kenora

Davis wrote a letter to Ontario Health Minister Sylvia Jones, asking for the travel grant to be increased and, more importantlyly, for help to get home.

“I’ve met people from Fort Frances, from Geraldton, and Little Pic River, and we all ask for the same thing. Please get us home to our own community for treatment so we can live the life we were supposed to live,” Davis said, wiping tears away.

CBC News sent an email to Jones’s office in March to request an interview, but never received a response.

“It’s a real challenge in northwestern Ontario,” said Dr. Rory Silverberg, a nephrologist at the Thunder Bay Regional Health Sciences Centre who provides kidney care to people across the region.

“When you’re sick with renal failure or kidney failure, and you have to come all the way to a city where you might not have friends or family to support you, you’re feeling unwell because of your illness and then you’re receiving this new treatment … it’s really brutal.”

Capacity expansions may be coming

The kidney care program in Thunder Bay was first set up in the 1960s, said Dr. Bill McCready. A retired nephrologist, McCready arrived to the city in the early 1980s to lead the fledgling program.

There were only a handful of dialysis patients at the time, he said, but the numbers have been constantly increasing through the decades. McCready noticed many people were coming from elsewhere in the region, and they were struggling to do well given they’re so far removed from their families.

With funding from the Ontario government, McCready helped set up satellite dialysis centres in Sioux Lookout, and then a few years later in Fort Frances in the 1990s and early 2000s. Around the same time, physicians from Manitoba helped establish the satellite centre in Kenora — largely due to the proximity of Kenora to the provincial border.

Prior to the COVID-19 pandemic, the Thunder Bay Regional Health Sciences Centre assumed responsibility for the dialysis centre in Kenora, after the Manitoba Renal Program identified capacity issues, according to a statement from Ontario Health.

There have been a few capacity expansions in recent years, but not enough, McCready said.

“The way that we plan health care is you wait for your dialysis unit to get full, and then the ministry, after many years of negotiations, agrees to increase the numbers … you might go through a period where your numbers are not very high and there’s empty spots in the dialysis unit, and that’s precisely the time when you should be planning an expansion.”

In a statement, Ontario Health said it has approved funding for additional hemodialysis stations at the Thunder Bay hospital, and they are contemplating adding stations at the Lake of the Woods District Hospital in Kenora, and creating a new dialysis station in Dryden.

They did not provide a timeline when those expansions may happen, but a spokesperson with the Kenora hospital said they hope to hire additional staff by June to open two more treatment spots — which would equate to an additional eight patients who could be treated every week.

There is potential to open one more spot in Fort Frances, if specially trained staff can be recruited, added Marcello Bernardo, a spokesperson with the Thunder Bay Regional Health Sciences Centre.

There are also roughly 90 people using home dialysis options across northwestern Ontario, said Bernardo.

But that doesn’t work for everyone, said Craig Lindsay, the senior manager of programs and public policy with the Ontario branch of the Kidney Foundation of Canada.

Lindsay told CBC News the province needs to do more to keep up with demand for dialysis, including improving access to preventive kidney care, expanding access to home and in-hospital dialysis options, and increasing social assistance for people living with kidney disease.

“Most people with kidney disease live well below the poverty line … the Ontario Disability Support Program, the disability pension — none of them are meeting the needs,” he said.

“We’re losing ground here in Ontario certainly, and I would be surprised if it’s not the same across Canada. You can’t open enough dialysis centres to meet the demand.”

Relying on Facetime and phone calls

The day Cullingham spoke to CBC News happened to be the 16th birthday of his twin granddaughters.

If he were back in Kenora, Cullingham said, he would have taken the girls out to teach them how to drive.

Even if some of the regional hospitals expand capacity for in-hospital dialysis, Cullingham doesn’t know whether he will get a spot.

The waiting list is fluid, and shifts based on “many clinical factors that need to be considered, such as clinical stability and medical complexity,” according to the Thunder Bay hospital.

So until he gets the official notice, Cullingham and more than a dozen others are stuck going to Thunder Bay, waiting to go back home, and relying on Facetime and phone calls to stay connected.