Kidney treatment woes plague couple

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This article was published 27/01/2020 (2147 days ago), so information in it may no longer be current.

RAPID CITY — Steve Hay is sick and tired, and it’s not just because of the kidney disease he has been living with for the past three years.

He and his wife Lora have endured hours-long trips into Winnipeg for dialysis because there were no spots available in Brandon, a home-dialysis program that went horribly wrong and a missed transplant opportunity that they blame on the machines Steve was given to use.

The couple from Rapid City were recently in the spotlight after sharing their story with CTV News.

Steve, 49, has Type 1 diabetes, a condition he has had since he was a boy.

In the summer of 2017, his kidney functions suddenly quit and he started dialysis that August.

Since then, he hasn’t been able to return to work as a service technician at Brandon Mobility because of his illness. Lora, 48, works as a recruiter at Westcan Human Resource Solutions in Brandon. She is now the family’s sole provider.

In an interview with The Brandon Sun on Saturday, Steve said he started dialysis at the renal clinic at Brandon Regional Health Centre, but when it was suggested he join the home dialysis program, he jumped at the opportunity.

“It sounded like it was going to be such a dream,” he said, adding it would allow him to stay at home, have the treatment at night while he slept and avoid having to drive into Brandon when the roads were bad.

Instead, it turned out to be a nightmare.

After spending about a month training to use the home dialysis machine at Seven Oaks Hospital in Winnipeg, Steve started the program at home. 

Everything was fine at first, he said, but then the dialysis machine, an NxStage System One, began to malfunction, continually setting off alarms. Technicians from Winnipeg came out several times and replaced one machine after another, but none worked properly, he said.

Lora said they had tried several times during that bleak period with the machines to go back to the renal clinic in Brandon for treatment, but there were never any openings available.

“It was the worst decision I ever made,” Steve said of going into the home dialysis program, adding it was the machines, not the staff of the Manitoba Renal Program, that made their lives miserable.

What made it even worse was that Lora, who proved to be a match as a donor, was supposed to donate one of her kidneys to her husband last September. Two days before the operation, they learned his hemoglobin was too low and the procedure had to be scrapped.

“It was kind of a no-brainer for me to become a donor. It just seemed to make the most sense,” said Lora, adding she figured she could have another few decades with her husband of 25 years, or watch him hooked up to a dialysis machine for as long as he was able.

When they learned Steve couldn’t go ahead with the operation, Lora said she was extremely disappointed.

“You get to a point where you’re ready to go,” she said. “Let’s get it done. I’m ready for the rest of our lives together.”

“I was angry with the world,” Steve said.

At the end of November, after going to Seven Oaks for his monthly checkup, Steve was readmitted into the treatment unit there, where he spent nine weeks driving back and forth from Rapid City three days a week.

Finally, last Wednesday, he returned to Brandon for treatment.

They are now waiting for a spot to come open for surgery sometime after February so Steve can finally receive his new kidney from his wife.

Lora said their experience has not changed her mind about the benefits of home dialysis for others.

“I think it’s a good option if they have the right machine,” she said, noting there are other, better machines available.

In an emailed statement to the Sun, a spokesman for Fresenius Medical Care North America, which sells the NxStage home hemodialysis machines, said the units are currently being used by more than 100 people in Manitoba and have a proven track record of reliability.

Brad Puffer said they offer pre-packaged bags of dialysate where access to appropriate water isn’t available, or they suggest using a more advanced pre-treatment water filtration system.

The Hays said they tried both options, but neither solved the problem.

Manitoba Renal Program spokeswoman Amie Lesyk said in an emailed statement to the Sun that the expansion of dialysis services in Dauphin this year and Swan River last year has helped Prairie Mountain Health create dialysis patient capacity across the whole health region with more opportunities for people to dialyze closer to home after starting dialysis in Brandon.

“The Brandon Regional Health Centre has been increasing its capacity through efforts such as moving to seven-day-a-week dialysis (versus six days), and they are currently working on adding capacity to this unit to address growth in the need for dialysis,” she said.

BRHC launched its home peritoneal dialysis program in 2019 and is currently securing equipment to launch its home hemodialysis program in the coming year, Lesyk said.

Peritoneal dialysis is a type of dialysis that uses the peritoneum in a person’s abdomen as the membrane through which fluid and dissolved substances are exchanged with the blood. It is used to remove excess fluid, correct electrolyte problems and remove toxins in those with kidney failure.

» brobertson@brandonsun.com