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.
Thunder Bay artist with lupus prepares for kidney transplant
After a year of receiving dialysis treatment, Lucille Atlookan is receiving a present from her partner he may never be able to top: a kidney transplant. Here’s the story of the Thunder Bay, Ont., couple as they prepare for surgery in Toronto.
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.
Atlookan, a 2-Spirit Anishinaabe artist from Eabametoong First Nation who now lives in Thunder Bay, is shown completing a beaded piece for her father. Atlookan was diagnosed with lupus, an autoimmune disease, in 2013. (Sarah Law/CBC)
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.
The first Walk for Lupus in Thunder Bay was organized by Vanessa Cava and Abbey Hunter. It drew over 200 participants and raised over $21,000 this summer. (Submitted by Abbey Hunter)
“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.”
The Canadian government says it will donate up to 200,000 vaccine doses to fight the mpox outbreak in Congo and other African countries.
It says the donated doses of Imvamune will come from Canada’s existing supply and will not affect the country’s preparedness for mpox cases in this country.
Minister of Health Mark Holland says the donation “will help to protect those in the most affected regions of Africa and will help prevent further spread of the virus.”
Dr. Madhukar Pai, Canada research chair in epidemiology and global health, says although the donation is welcome, it is a very small portion of the estimated 10 million vaccine doses needed to control the outbreak.
Vaccine donations from wealthier countries have only recently started arriving in Africa, almost a month after the World Health Organization declared the mpox outbreak a public health emergency of international concern.
A few days after the declaration in August, Global Affairs Canada announced a contribution of $1 million for mpox surveillance, diagnostic tools, research and community awareness in Africa.
On Thursday, the Africa Centres for Disease Control and Prevention said mpox is still on the rise and that testing rates are “insufficient” across the continent.
Jason Kindrachuk, Canada research chair in emerging viruses at the University of Manitoba, said donating vaccines, in addition to supporting surveillance and diagnostic tests, is “massively important.”
But Kindrachuk, who has worked on the ground in Congo during the epidemic, also said that the international response to the mpox outbreak is “better late than never (but) better never late.”
“It would have been fantastic for us globally to not be in this position by having provided doses a much, much longer time prior than when we are,” he said, noting that the outbreak of clade I mpox in Congo started in early 2023.
Clade II mpox, endemic in regions of West Africa, came to the world’s attention even earlier — in 2022 — as that strain of virus spread to other countries, including Canada.
Two doses are recommended for mpox vaccination, so the donation may only benefit 100,000 people, Pai said.
Pai questioned whether Canada is contributing enough, as the federal government hasn’t said what percentage of its mpox vaccine stockpile it is donating.
“Small donations are simply not going to help end this crisis. We need to show greater solidarity and support,” he said in an email.
“That is the biggest lesson from the COVID-19 pandemic — our collective safety is tied with that of other nations.”
This report by The Canadian Press was first published Sept. 13, 2024.
Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.
HALIFAX – The Nova Scotia government says it could be months before it reveals how many people are on the wait-list for a family doctor.
The head of the province’s health authority told reporters Wednesday that the government won’t release updated data until the 160,000 people who were on the wait-list in June are contacted to verify whether they still need primary care.
Karen Oldfield said Nova Scotia Health is working on validating the primary care wait-list data before posting new numbers, and that work may take a matter of months. The most recent public wait-list figures are from June 1, when 160,234 people, or about 16 per cent of the population, were on it.
“It’s going to take time to make 160,000 calls,” Oldfield said. “We are not talking weeks, we are talking months.”
The interim CEO and president of Nova Scotia Health said people on the list are being asked where they live, whether they still need a family doctor, and to give an update on their health.
A spokesperson with the province’s Health Department says the government and its health authority are “working hard” to turn the wait-list registry into a useful tool, adding that the data will be shared once it is validated.
Nova Scotia’s NDP are calling on Premier Tim Houston to immediately release statistics on how many people are looking for a family doctor. On Tuesday, the NDP introduced a bill that would require the health minister to make the number public every month.
“It is unacceptable for the list to be more than three months out of date,” NDP Leader Claudia Chender said Tuesday.
Chender said releasing this data regularly is vital so Nova Scotians can track the government’s progress on its main 2021 campaign promise: fixing health care.
The number of people in need of a family doctor has more than doubled between the 2021 summer election campaign and June 2024. Since September 2021 about 300 doctors have been added to the provincial health system, the Health Department said.
“We’ll know if Tim Houston is keeping his 2021 election promise to fix health care when Nova Scotians are attached to primary care,” Chender said.
This report by The Canadian Press was first published Sept. 11, 2024.
ST. JOHN’S, N.L. – Newfoundland and Labrador‘s chief medical officer is monitoring the rise of whooping cough infections across the province as cases of the highly contagious disease continue to grow across Canada.
Dr. Janice Fitzgerald says that so far this year, the province has recorded 230 confirmed cases of the vaccine-preventable respiratory tract infection, also known as pertussis.
Late last month, Quebec reported more than 11,000 cases during the same time period, while Ontario counted 470 cases, well above the five-year average of 98. In Quebec, the majority of patients are between the ages of 10 and 14.
Meanwhile, New Brunswick has declared a whooping cough outbreak across the province. A total of 141 cases were reported by last month, exceeding the five-year average of 34.
The disease can lead to severe complications among vulnerable populations including infants, who are at the highest risk of suffering from complications like pneumonia and seizures. Symptoms may start with a runny nose, mild fever and cough, then progress to severe coughing accompanied by a distinctive “whooping” sound during inhalation.
“The public, especially pregnant people and those in close contact with infants, are encouraged to be aware of symptoms related to pertussis and to ensure vaccinations are up to date,” Newfoundland and Labrador’s Health Department said in a statement.
Whooping cough can be treated with antibiotics, but vaccination is the most effective way to control the spread of the disease. As a result, the province has expanded immunization efforts this school year. While booster doses are already offered in Grade 9, the vaccine is now being offered to Grade 8 students as well.
Public health officials say whooping cough is a cyclical disease that increases every two to five or six years.
Meanwhile, New Brunswick’s acting chief medical officer of health expects the current case count to get worse before tapering off.
A rise in whooping cough cases has also been reported in the United States and elsewhere. The Pan American Health Organization issued an alert in July encouraging countries to ramp up their surveillance and vaccination coverage.
This report by The Canadian Press was first published Sept. 10, 2024.
