If you signed a petition to Fraser Health for a Chilliwack kidney dialysis centre this summer, you likely met Elaina Wugalter and Gayle Irving.
The two women only met last year, but they share a close bond — and similar stories.
Both of their husbands have spent years dealing with the advanced stages of kidney disease. Elaina’s husband Morris passed away recently. Gayle’s husband Robin is currently in the hospital long term, recovering from a hip injury.
They have each told their personal stories in the media, on Facebook, and to people in government.
And all summer they have spent their Saturdays together telling those stories again while collecting signatures to take to Victoria in the fall. They are setting up mostly at farmers’ markets in the eastern Fraser Valley, thanks to the help of their mutual friend Mhora Ogmundson.
All three women want to see an expansion of outpatient renal care in the region. They have met with politicians, including local MLAs. When Adrian Dix was running against Christy Clark, they spoke to him and he was enthusiastic about the project. That enthusiasm has waned, they say, and now they hope to get their message through to someone, anyone.
“We’ve been petitioning, writing letters, doing everything we can do, but how do I know it’s not falling on deaf ears?” Gayle says.
They say a community renal dialysis clinic in Chilliwack would ease pressure off Abbotsford’s overburdened clinics and benefit the whole eastern Fraser Valley.
When Highway 1 was closed due to the floods in November 2021, a reported 51 patients were airlifted from Chilliwack to Abbotsford, because there was no way to keep them alive without dialysis.
In addition to Chilliwack, there are patients in Hope, Boston Bar, Agassiz and Harrison Hot Springs who use the two Abbotsford clinics. There are also patients in Mission, Langley and Maple Ridge who use the clinics.
“There’s no question it would free up resources,” Gayle says of having a clinic in Chilliwack.
And it’s not just heli-jets in emergencies that are transporting patients for this important treatment, they explain. Through their experiences, they have learned that it’s a daily cost that Fraser Health bears.
Gayle’s husband, Robin, is recovering from his injury at Chilliwack General. Since CGH can’t provide dialysis for its patients, Robin, 81, gets bused to Abbotsford at least three times a week.
These are long days of waiting for a ride, lying in a gurney in a patient bus in Highway 1 traffic, sitting for the hours required for hemodialysis, and then back to CGH. He gets a day of rest, sometimes, and then he is sent there again.
One recent day, Gayle says, her husband was picked up at 7:30 a.m. He returned to CGH at a quarter to three.
“It can be a nine-hour trip,” she says, from Chilliwack to Abbotsford for dialysis and back. And then there are those who live in Fraser Health’s eastern-most regions, like Hope, Sunshine Valley and Boston Bar.
Robin has decided not to go on the donors’ list for a transplant. He doesn’t want to take one away from a younger patient, which means he will be on dialysis for the rest of his life.
The only way out of dialysis is to get a “new” kidney. B.C. has the longest wait times for a kidney at almost six years on average compared to Nova Scotia or Quebec, where the wait is about two years.
However, Morris lucked out, thanks to his wife’s dogged determination, and was able to get a transplant within a year of needing one.
In that one year, though, they also had to do the rigorous schedule of long dialysis days, multiple times a week.
That was in 2012, and his new kidney served him well. But kidneys don’t last forever, and this year it was time to start thinking about what to do next.
Dialysis would be necessary once again, but Elaina and Morris didn’t want to go back to the long drives and longer days. They had been planning to move to Abbotsford, to avoid it all. It would have meant losing their home, moving away from grandchildren, and they weren’t looking forward to it.
But Morris got sick and ended up in hospital long term.
“My husband never came home,” Elaina says, her strong voice cracking.
Robin is also struggling in hospital, as the cumulative effect of so much travel between Chilliwack and Abbotsford wears away at his health.
Robin went to his dialysis appointment just a few days before the highway was closed between Chilliwack and Abbotsford. He missed his next dialysis, Gayle says. Like others, he was flown over the flood waters so he could receive his life-saving treatment and was housed in a hotel for 18 days.
The crisis highlighted the need for a community clinic for Chilliwack for both couples, and likely many other renal patients cut off from treatment.
Fraser Health has not provided data requested on this topic, but the women say there are dialysis appointments that are starting past 9 p.m. and running through the night into the early morning. Many patients are unable to drive themselves home, which means a friend or family member is also on the hook for the evening.
It’s an enormous task just to stay alive, they say, and unfair and even impossible to require all renal patients to live in the few communities in B.C. that have clinics.
They wish they were included in post-flooding talks with officials, and want the chance to explain just how much the highway travel affects patients and their families. It’s no secret that the gauntlet between the two cities is often clogged, dangerous, and even fatal. For people driving it nearly every day, the risks seem even higher.
“We need a unit here and it doesn’t have to be in the hospital,” Gayle says. “The one in Abbotsford is in a little strip mall.”
(The other clinic is at Abbotsford Regional Hospital.)
“When you live these kind of diseases it becomes a family affair,” Elaina says. “Just because I’m not ill doesn’t mean it doesn’t affect me. It’s not just yours, it’s ours.”
She is still in mourning, and speaks often about “our kidney” or “when we were doing hemodialysis.”
They have been lobbying the government for years about the pressures on the patient, and the system. Many of the renal nurses live in Chilliwack and would love the opportunity to work closer to home, she says.
She drove Morris to countless dialysis appointments, getting to know other patients and the health care providers. Dialysis can be hard on the body, and a ride home can be necessary.
“At the beginning he would drive himself, but he was diabetic,” she explains, and dialysis affects blood sugars. “One day he almost didn’t make it back home. While he was driving his blood pressure went down.”
They looked into paying privately for the hospital transfer but “it was a fortune.”
A social worker managed to get it covered, and Elaina said she wished she knew her full name because of the difference it made to Morris’s life.
When they were able to find a kidney within a year, it was like winning the lottery. They got some time back. They got time together. But it’s not a cure; it’s a long-term treatment.
“People think a transplant is a cure but it isn’t,” Elaina says. Kidney disease is for life.
All the more reason they see the lack of a community clinic as a “critical” situation. Community clinics are in non-medical buildings, such malls and empty storefronts — a resource that’s plentiful in Chilliwack. They have about 15 beds, a small staff of nurses, and a nephrologist who holds clinics certain days.
“I just want to make this happen,” Elaina says. “If I could get a big windfall I could build one here.”
While she says “our story is over,” it isn’t for others, like Gayle and Robin.
“Nobody else should have to go through this,” Elaina says.
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