Alyse Custer refuses to let anything slow her down despite her diagnosis
- By NC Raine | May 12, 2023
Three times a week, Alyse Custer must take herself to hospital in Saskatoon where, for four hours she receives dialysis. As Custer has kidney failure, the dialysis process performs some of the functions that kidneys usually do to keep her the body healthy, such as removing extra fluid and waste products from the blood – an essential process that the average person takes for granted.
The process is exhausting, on top of being extremely time consuming, and is one that Custer, 25, has been undergoing for four consecutive years.
“I’m exhausted all the time,” said Custer.
“Sometimes I think about how much time I’ve spent sitting in those chairs. It can be depressing. I feel like I’m stuck all the time. I’m tired of waiting.”
Custer is presently on the waitlist to receive a kidney transplant, but without a living donor, it could be months, if not years, of waiting.
From Pelican Narrows, and currently a fourth-year Social Work student at the First Nations University of Canada in Saskatoon, Custer has had a long and complex journey with her health. It started when she was only 11 and began suffering from regular nose bleeds – a symptom of kidney failure. But her problems were dismissed because of a systemic issue in our healthcare system, she said.
“There’s a lot of systemic racism in healthcare. They never did bloodwork or tried to figure out what was wrong. They just gave me nasal sprays for a year,” she said.
After Custer’s health was worsening, her mother, Andrea Custer H. Clarke, took her to the hospital, where Custer suffered a cardiac arrest. After a second cardiac arrest shortly thereafter, Custer was put into a medically induced coma. It was only then they discovered Custer’s kidneys were failing.
“She was drowning from the inside,” said Clarke, Custer’s mother.
Clarke had to move her family to Edmonton, as there was no pediatric dialysis or pediatric nephrologist (kidney specialist) in Saskatchewan. She eventually quit her job to take care of Custer, and had to regularly fundraise to afford the life essentials. Clarke donated a kidney to her daughter in 2012.
“I wanted her to have a normal life where she didn’t have to depend on a machine to keep living. And, that did work for a few years,” said Clarke.
In 2018, Custer’s kidneys started failing again, and has since been on regular dialysis. Despite the ongoing health issues, Custer is vehemently independent – she lives on her own in Saskatoon, is completing a post-secondary social work program in the standard four-years, has a part-time job, and takes herself to dialysis three times a week.
Custer also does art and graphic design, creating ribbon skirts, stickers, and graphic art for her mother’s store. She also is immersed in her culture, attending ceremonies and smudges, and speaking Cree whenever possible.
“I don’t know how she does it. But she keeps pushing forward, even though she’s really tired and just wants to have a transplant and live,” said Clarke.
“She’s an amazing young woman. She’s kind and patient with her siblings, she’s hardworking, she’s talented, she’s a very strong person. She deserves another chance at life,” she said.
Unfortunately, there is currently no set timetable for Custer’s much-needed kidney transplant. According to the Canada Institute for Health Information, 2,782 organ transplants were performed in Canada in 2021, with 78 percent of those transplants used deceased donor organs, and over 4,000 people on the waitlist.
But, another 2021 study in the Canadian Journal of Kidney Health and Disease found that Indigenous communities in Canada experience various barriers in accessing culturally safe medical information and care, resulting in inequitable access to kidney transplants.
“Kidney failure is a huge problem for Indigenous people, but not a lot of Indigenous people know much about it so there’s not a long of people willing to donate,” said Custer.
In Saskatchewan, there were 115 people waiting for a kidney transplant in 2021, with two having died while waiting a transplant.
For Custer, a transplant would be nothing short of transformational to her life.
“I wouldn’t have to sit in a chair three times a week. I wouldn’t have such a limited diet. I could actually travel and leave Saskatoon for more than one night. And just my general health would be better, I would have more energy to do things,” she said.
“It would be freeing.”