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Saskatchewan couple weathers all storms

With help from her husband Alvin, Joyce Ermel is one of just 15 people receiving home kidney dialysis in northwest B.C.
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Joyce and Alvin Ermel with the kidney dialysis machine they run from their home in Houston. Joyce is one of just 15 home kidney dialysis patients in northern B.C.

Love takes many forms.

In the home of Alvin and Joyce Ermel, love is a bright blue dialysis machine with looping tubes. It whirs as it draws blood from Joyce's arm and cleans it—a job her kidneys suddenly quit doing on July 3, 2010, thanks to a rare disease that strikes one in two million people.

Alvin, who turns 76 in May, now runs the home dialysis machine that keeps Joyce alive and the two of them living in Houston.

Every second day, or whenever Joyce needs it, Alvin installs new tubing, a new blood filter, and primes the machine with IV fluid.

Then, with a practiced hand, Alvin guides a needle to the "buttonhole" in Joyce's arm—a surgically-made passage between her artery and vein that he says is tricky to use but means less chance of infection.

"Even the doctors that come in here and see it—they just look at Alvin and say, 'I can't believe you're doing this,'" says Joyce.

But she knows better.

When he was a boy growing up in Bethune, Saskatchewan, she says Alvin told his parents that he wanted to be a doctor.

Money was tight though, and they needed him to work on the family farm.

Alvin stayed, and he did well—this summer, he and Joyce will fly back to Bethune for the town's centennial after farming there for 50 years.

Still, handy as Alvin was fixing farm equipment, Joyce says her husband always longed to fix people instead.

"He took a St. John's Ambulance course, and every time there was an accident in Regina he would be driving behind the ambulance to see if he couldn't do something," she says.

"So this was pre-ordained years ago."

Luckily for Alvin, even after he starts Joyce's dialysis, there is still plenty of work to do.

For the next four and a half hours, he stays close by while the machine runs and Joyce sleeps, does crosswords, listens to radio, or phones whoever she owes a call. Friends drop by, some after signing up to a visit list at church—a blessing Joyce says helps pass the time.

Meanwhile, the machine cycles through more than 80 litres of blood.

Alvin steps in regularly to check a screen and make sure Joyce's blood pressure and the machine's flow rate are okay.

"This is just like a monitor on a combine, actually," he said, taking down some numbers in the middle of a dialysis.

Once each session is over, Alvin disposes of the tubes and blood filter, then mixes one of three cleaning solutions to disinfect the machine. All in all, he says it's a five-hour job.

But that doesn't include the time Alvin and Joyce spend arranging supplies, swapping out water filters, or taking monthly blood samples that Alvin spins in a centrifuge and mails to a lab for nutrient testing.

"Both of them are up there among my star patients," says Angela Robinson, a home dialysis nurse who regularly visits the Ermels.

As well as Alvin's fine work on the dialysis machine, Robinson noted how well Joyce watches her diet.

Given how hard it is to process salt and potassium, dialysis patients are caught in the strange position of having to keep most healthy foods off their plate.

"White flour, white sugar, nothing whole wheat, no greens, no salt," Joyce says. "I tell them that my diet is worse than this dialysis machine."

But Joyce does follow her recommended diet, Robinson said, something she sees in regular reports from Joyce's dietician.

"I know things are going well there," she said.

Robinson says she has 15 home dialysis patients right now, scattered from Dawson Creek to Chetwynd and Quesnel.

Many people in the Northern Health area chose home dialysis to stay in their home town, she says. From Houston, the closest dialysis clinics are in Terrace or Prince George.

But since 2004, Robinson says the province has also stepped up home dialysis in more urban parts of the province because it often shows better results.

As Joyce says, compared to in-clinic dialysis, home dialysis is a Cadillac.

"You can do it when you want, for as long as you want," she says.

Robinson agrees, noting that even at independent clinics, where patients can hook up the machines themselves, patients have to follow a more limited schedule.

"If you want to do it, and you meet the criteria, we can get you home," she says.

But not everyone is capable of taking on as much as Alvin has.

"He needs a medal," Joyce says. "He doesn't have a chest big enough."