When Lucille Atlookan found out her kidneys were failing, she never expected to find a transplant match so quickly, let alone from her partner.
The 2-Spirit Anishinaabe artist was diagnosed with lupus in 2013. The incurable autoimmune disease causes inflammation in the tissues and organs, resulting in chronic pain. In Atlookan’s case, the 34-year-old’s symptoms include rheumatoid arthritis and kidney dysfunction.
Her kidney transplant, scheduled for Jan. 18, will bring her from Thunder Bay, Ont., to Toronto. It will change her life, and that of her partner, Andrew Woods.
Atlookan is from Eabametoong First Nation, a remote Ojibway community also known as Fort Hope. It’s about 360 kilometres north of Thunder Bay, where she lives and receives dialysis treatment three times a week at the hospital. Each session takes four hours.
“It’s really tiring. I can tell that my skin is changing, looking more dull, bags under my eyes,” Atlookan said. “The colour of my eyes, too, around the whites is starting to change.”
About 1,000 people in Ontario are currently waiting for an organ transplant, with a significant portion needing kidneys, said Craig Lindsay of the Kidney Foundation of Canada. According to the Trillium Gift of Life Network, nearly 800 kidney transplants were done in 2023. Most involved deceased donors.
Since three members of Atlookan’s immediate family are diabetic, they cannot be organ donors, and her other siblings are too young.
Siblings have about a 25 per cent chance of being an exact match for a living donor, so when Woods was tested and found out he could donate his kidney to Atlookan, he took it as a sign that he was making the right decision.
“What reason is there not to?” Woods said. “I mean, it’s relatively safe. It’s probably about as safe as driving to work every day for me to donate.”
‘A scary journey’
Lindsay, director of programs and public policy with the foundation’s Ontario branch, has been living with a kidney transplant for nearly a decade.
Depending on a person’s tissue type, the wait for an organ from a deceased donor may be two to six years. However, the wait for a living donor could be under a year, and typically the organ would be in better condition and last longer, Lindsay said. Oftentimes, people go off the wait-list because they become too sick for the surgery.
The kidney foundation aims to make it easier for patients and their families to navigate the health-care system by providing education, peer support, financial assistance and advocacy.
“We sit outside of the health-care system, but we fill a lot of the gaps for people,” Lindsay said. “A good part of what we do is help them understand what’s happening, what’s next and how to prepare for it.”
There are only five organ transplant centres in the province — in Hamilton, Toronto, London, Kingston and Ottawa.
“I’m very well aware that if your kidneys fail in Thunder Bay, you’re looking at a scary journey,” Lindsay said.
People must also pay to be away from home for an extended period. Funding resources, like the Northern Health Travel Grant, are available, “but my sense is they’re not enough.”
“We still hear people choosing to either take their medication or buy groceries by the end of the month,” Lindsay said.
He wants more done to empower patients to be active participants in their own care. Having access to electronic health records, for example, is a big step forward, as well as virtual care when possible to avoid travel costs.
Calls for more support
Atlookan said her late grandmother received dialysis treatment for about five years.
“She looked different after that whole treatment – and she got really sick. She had to move here from Fort Hope, away from her family, away from the land that she knew.”
While Atlookan was already living in Thunder Bay when she started dialysis, it has been isolating. People often don’t believe she is sick or needs a disability parking permit because she appears healthy, she explained.
She would like to see more peer support in northern Ontario for people with chronic kidney disease.
“What I’ve noticed when I go to groups is that I’m the most visible brown person there, the youngest there, too, and it’s kind of hard to connect with people.”
Advocacy as healing
Abbey Hunter was 16 when she was diagnosed with lupus. Now 21 and finishing her final year of political science at Lakehead University, the Thunder Bay resident remembers being a “mystery” to doctors.
In May 2018, she was airlifted to London, Ont. Doctors discovered more than 750 millilitres of fluid around her heart, and after weeks of tests, the lupus diagnosis gave her a sense of validation. She travels to Toronto for care every three months, which includes seeing a rheumatologist.
“Especially as a young person, I felt very alone and ignored for a long time because I began to feel like it was all in my head, right?” Hunter said.
More than one in 1,000 Canadians are affected by lupus, according to Lupus Canada. Hunter said it’s often called the “disease with 1,000 faces” because it impacts people so differently.
“That’s often why lupus patients feel very alone,” she said. “It’s hard when you live in the north, especially living with lupus. We have no resources here for a lot of autoimmune diseases.”
For example, Thunder Bay only has one permanent rheumatologist, while the Ontario Rheumatology Association said the city needs at least three, Hunter said.
She has received a lot of support from her family, and through advocacy. She is a patient family adviser at Thunder Bay’s hospital, is involved with Lupus Ontario, and sits on the Noojmawing Sookatagaing Thunder Bay District Ontario Health Team People-Centred Advisory Council.
Last summer, she and her friend, Vanessa Cava, organized the city’s first Walk for Lupus and raised more than $21,000 to support the Advanced Clinician Practitioner in Arthritis Care Program as part of efforts to bring more specialists to northern Ontario.
Hunter plans to complete a master’s program in public health and wants to push for a more digitized, holistic and people-centred health-care system to better support people with chronic diseases.
Need for more donors
Atlookan is both nervous and excited for her upcoming kidney transplant at Toronto General Hospital. After her four- to eight-week recovery period, she’ll be able to work full time.
She has dreams of travelling to New Zealand and visiting Hobbit houses, showering without a chest catheter and having fewer dietary restrictions.
“I look forward to eating a banana.”
While about 80 per cent of Canadians support organ donation, only a third are registered donors, Lindsay said. He encourages people to register at beadonor.ca.
“Consider it because you’re going to save somebody’s life, or at least prolong it, and with very little risk to yourself,” Woods said.
“I think it’s probably one of the best things that people can do.”