The year after Caleb Mckay found out he had kidney disease, his family packed up and moved more than 500 kilometres south for health care.
"It's like my world collapsed and I now have to figure out what I'm going to do," said Mckay, 61. "What's going to happen? How's it going to be here [in Thunder Bay]?"
The need to move for health services is common for many First Nation people living in remote communities. Access to basic health services on reserve are sparse, so requiring more complicated health services often requires leaving the community.
Mckay, who is from Sachigo Lake First Nation, Ont., but now lives in Thunder Bay so he can get dialysis, receives medical insurance under the Non-Insured Health Benefits Program, which provides extended health care to First Nations and Inuit people living in Canada.
Under the program's Medical Transport Policy Framework, clients who must travel repeatedly on a long-term basis for medical treatments — like Mckay — have their travel and board covered for up to four months.
After that initial period, a patient's needs are reassessed, and often their coverage is extended, says Heather Larson, senior manager of program delivery for NIHB in Ontario.
Paying out of pocket
Mckay lives at the Wequedong Lodge, which is where most First Nations patients live while in Thunder Bay for medical treatment.
Recently Mckay was told that under NIHB, his and his wife's flights and accommodations are covered, but they must pay for their four-year-old adopted son Greg's stay at the lodge. The lodge told Mckay it will cost $110 a day for Greg to stay in his room.
Greg has been under Mckay's care since he was a baby.
"When we got him I wasn't sick … and I didn't know I was going to have this problem," he said.
Under the NIHB's medical transport policy, any person accompanying a client must serve either a medical or legal need.
"In terms of a minor child, they wouldn't be providing any medical or legal support to the patient.… Their accommodation and transport costs would not be covered by the Non-Insured Health Benefits Program," said Larsen from NIHB.
Mckay and his wife can't afford to keep their son with them at the lodge.
"We already talked about it. We can't just send [Greg] home and let somebody else take care of him," said Mckay.
"We love our son, and we don't want him to lose both of us. We don't want that, so we decided if she has to, if it comes to that, she has to take care of him and take him home."
Pressured to find housing
The Wequedong Lodge will typically accommodate stays that are longer than four months, but Mckay said he feels pressured by his case worker to start looking for permanent housing.
"I receive $860 [a month] from [Ontario Disability Support Program] that they're willing to use for my housing budget.… If the housing is higher, then I have to get it out of my basic allowance," he said. Rent could cost as much as $1,200 a month, he said.
Once he finds housing in Thunder Bay, he will no longer get help from the lodge, which currently provides transportation for appointments, he said.
He's now thinking about looking for work in Thunder Bay.
"I don't know if I'll be able to work again. Sometimes I feel like I could do it, but you know, the way I feel sometimes … I don't think I could go back to work and be able to work eight hours [a day]," said Mckay.
Selling everything you own
Albert Mckay, the medical driver for Sachigo Lake, can relate to his brother Caleb's story. Back in 2008, he had to move to Winnipeg while his wife battled cancer.
"We had asked to get board, a house or something through Non-Insured [Health Benefits], and they said, 'We can only help you for a while, for a few months — maybe three months at the most,'" Mckay said.
Mckay ended up selling all his possessions in Sachigo Lake in order to move his entire family to Winnipeg so his wife could receive radiation treatment. They ended up staying in the city for a few years.
"I don't understand why that is. They should have been able to help us, 'cause we were in that treatment for more than just three months," said Mckay.
Home dialysis a complicated option
Caleb Mckay misses his family and friends back in Sachigo Lake and hopes one day to return home, at least for a visit.
But with no way to get treatment in the community and a limited number of flights available, he knows a visit might mean missing a treatment.
He is also exploring other treatment options — including a kidney transplant or home dialysis — that would allow him to return home. But the wait for a transplant can be years and peritoneal home dialysis comes with complications, including the possibility of infections and inadequate dialysis.
"Peritoneal dialysis is where they put a port — a catheter — into your abdomen; you basically pour in a bag of fluid, let it slosh around for a few hours, the toxins dissolve into there and you pour it out again," said Dr. Lisa Letkemann, who works in Sandy Lake First Nation, a community in northwestern Ontario.
Letkemann also says peritoneal dialysis is labour intensive — patients must do it four or five times a day.
Mckay's current hemodialysis treatment requires him to go in for treatment for four hours a day, three times a week.
Several First Nations in Manitoba have their own hemodialysis machines but trying to secure a machine comes with many challenges, Letkemann said.
"It's not as simple as 'We'll buy a machine.' I know some communities were hoping, 'Well, we'll just fundraise for a machine, set it up and be good to go,'" said Letkemann.
A machine requires a guaranteed clean water supply, reliable power supply and trained technicians.
It's a "huge multimillion-dollar endeavour to consider," Letkemann said.
This story is part of a series on access to health services in Sachigo Lake First Nation, that was funded by the Canadian Journalism Foundation. Stephanie Cram is the recipient of the 2016 CJF Aboriginal Journalism Fellowship.