Naskapi grandmother who had to move to Quebec City for dialysis still stuck there 6 years later

Each week as Lynn Einish rests in a hospital chair with two tubes connecting her to a hemodialysis machine for hours on end, her mind travels elsewhere.

She closes her eyes and she's back home, in the Naskapi Nation of Kawawachikamach, near Schefferville, Que., and almost 1,000 kilometres north of Montreal.

She says she dreams of the campfires outside her off-grid cabin, of collecting lavender on her property and the little luxuries of family meals, sipping tea and gazing out her windows overlooking Lake Matemace in northern Quebec.

But Einish hasn't been home in five years.

She is one of six residents who have had to move from Kawawachikamach to Quebec City to receive live-saving dialysis treatment.

"The first year and the second year were the hardest of my life. I had to go through surgery [after] surgery … I was so lonely I thought I was going to die," said Einish, who had to leave her job as a teacher.

"I cried myself to sleep every night and I always wake up thinking [I've woken] up to a nightmare."

She says she copes by throwing herself into hobbies like sewing and imagining herself being back in her "cosy" home.

"If I don't, I will go crazy. I probably will go down and I will just give up, but I'm not a person who gives up easily. I'm a fighter. I'm a warrior."

In May, for the first time in five years, Einish has been offered a small reprieve: a visit to her home, paid for by the health authority. She will make the short visit with her nephew, Edward Einish, who is also in Quebec City for dialysis.

But she still dreams about returning to her community for good and it's part of what inspired her to write a letter to Kawawachikamach tribal council two years ago, imploring them to get a dialysis machine.

CLSC to propose pilot project to health minister

It's a project the local health clinic got involved in nearly a year ago, said CLSC Naskapi executive director François Bérubé.

In two weeks time, representatives will travel to Quebec City to submit their proposal to Health Minister Christian Dubé and then wait to see if the pilot project (in collaboration with the CHU de Québec-Université Laval) will be approved.

"That's the first step," said Bérubé.

"It's really about bringing people back to their community, so they can be with their family, avoid the stress of living in big cities… [Because] living in a big city versus a community of 1,000 people, it's completely different. There are definitely more services in the big cities, but the tradition, the culture, it's very different."

When the CLSC began to explore the possibility of offering treatment in the community last year, Bérubé says staff visited the Cree community of Mistissini in the Baie-James area to learn from them.

While communities like Mistissini established a dialysis clinic in 2014, others like Waswanipi initiated a pilot project in 2019 of portable dialysis machines designed for at-home use.

"The difference for us is we want to do the [treatment] in a supervised facility, at the CLSC, instead of at home. But it would be the same process and the same equipment," said Bérubé.

"In the next four or five years we are aiming for eight machines, so that would give us … a total capacity of 16 people per week. Right now, it's good news we don't have that many prospective patients. We have six people, so we think we could start with two or three machines."

But even if they can source the machines, the process of transferring patients to mobile hemodialysis machines from those used in hospitals can be tricky, says Bérubé. It's part of why patients will be assessed over a period of six months through a pilot project.

"We are going to connect our patients to the portable dialysis machines during their treatment [in Quebec City]… that will allow us to monitor their reaction and the health of these patients for a period of six months," said Bérubé.

"The priority will always remain the safety of the patient … It is the doctors and nephrologists who will conclude if, clinically, the patient is stable."

He says that if patients respond well during the six-month period, they could be candidates for local treatment.

Indigenous Affairs Minister Ian Lafrenière visited Kawawachikamach this weekend, and says the fact that the community has no road access poses challenges when it comes to logistics and establishing certain types of medical care.

"That pilot project seems to be promising," said Lafrenière. "I love to see a community finding solutions."

'I only see them grow up through FaceTime'

It would be a gamechanger for Einish. She started dialysis because of damage to her kidneys caused by diabetes and painkillers which were prescribed to her after she suffered an injury.

"My hip was broken and those painkillers attacked my kidneys," said Einish.

Over the past six years in Quebec City, she says she has seen multiple friends and loved ones from Kawawachikamach, also there for dialysis, pass away.

"I've seen so much death … I don't want to die yet. Every day I kept telling myself and telling God, don't take me now. I have grandchildren. I want to see my little grandbaby girls," said Einish.

"I'm always positive [about] my disease. At first I didn't accept it. At first I said to myself, 'why me?'"

She says being so far away from her three kids and grandchildren has been a challenge.

"Two of my grandchildren, my grandbaby girls, I call them, [when] they were born I was at the hospital. I was here doing dialysis," said Einish. "It was so hard. I really wanted to hug them. I wanted to kiss them."

Now that they are age five and six, she hopes to catch up on time lost.

"I want to see them grow up. I can't right now. I only see them grow up through FaceTime."

'I'm desperate to go back home'

For now, Einish is unsure when she will be able to go back home permanently and live a normal life again.

Two years ago she was told she was eligible for a transplant. After undergoing three weeks of testing, she is still waiting, ever hopeful 2023 will be her year.

Her nephew Edward has been treated alongside his aunt for eight months. He was diagnosed with kidney failure unexpectedly in 2020.

"I had to leave my job because of my sickness," said Einish, sitting in a room with three other patients as he received his hemodialysis treatment. "Two years ago, that's the last time I went back home."

He says he is on the waiting list for a transplant but is impatient to get back to the wilderness.

"I want to go to the bush where the place is kind of quiet, peace[ful]. You don't hear traffic, no machines. The only thing you hear are the birds, the wind, the trees that are blowing. That's the thing I miss," said Einish.

"When I was a kid, I used to go to the bush everyday with my grandparents … Sometimes I'm desperate to go back home."

For the foreseeable future, he says he has to stay in Quebec City — returning to the hospital three times per week for four hours at a time, waiting for the day he can return to Kawawachikamach.

"That's the only thing I can do," said Einish. "Just wait."