Transplant candidate looks to boost donor rates

Watching your mother endure the effects of kidney failure and eventually die due to complications from the condition would be difficult for anyone.

But it was especially difficult for 29-year-old Bobbie-Lynn Burton, whose mother, Sudbury resident Danuta Burton, passed away last fall at the age of 57. That's because Bobbie-Lynn also has kidney failure.

Danuta developed the condition due to the effects of Type 1 diabetes. In Bobbie-Lynn's case, her kidneys were damaged when she was a small child due to urinary reflux, and then failed after a kidney infection when she was 23.

Bobbie-Lynn, who grew up in Sudbury, but has lived in Ottawa for the past 10 years, has been on dialysis ever since, a procedure her mother also underwent for 11 years.

“It's very difficult, her going through the same thing that I've been going through,” she said.

“At first, it was easy for me to start dialysis, because she was doing so well. Then as the years went by, especially in the last year, it got difficult seeing her go through that, because I worried that I would be in the same boat.”

Bobbie-Lynn has also been on the waiting list for a kidney transplant for the past six years. She said her mother did receive a kidney transplant in 2006, but had to go back on dialysis immediately, as her body rejected the organ.

But Danuta wasn't just an organ recipient. She was also an organ donor.

After her death, most of her organs were damaged because of the years of medical problems she endured, but her corneas were intact.

“We found out this Monday that her corneas were transplanted into two people,” Bobbie-Lynn said. “So it was amazing to know that happened, you know? We were able to help two people have sight.”

While the kidney transplant didn't work out for Danuta, Bobbie-Lynn said in her case, it could change her life.

That's why she and Craig Dunbar, another young Ottawa kidney transplant candidate, have launched an organ donation awareness campaign.

On Feb. 23, they're hosting an organ donation awareness event in Ottawa, where they hope to have 500 people make their donation intentions known by registering at beadonor.ca.

Right now, Ottawa's organ donor registration rates are only at about 20 per cent, Bobbie-Lynn said.

Thanks to awareness efforts in Greater Sudbury, registration rates in this area are some of the highest in the province, at about 50 per cent. But she said she'd still love it if people in her hometown signed up as organ donors.

Canadian Blood Services will also be testing people's blood types at the Ottawa event.

Knowing your blood type is the first step to become a living donor, Bobbie-Lynn said, adding that she and Dunbar are looking for people who might be willing to donate kidneys to them.

Bobbie-Lynn said she's wanted to raise awareness of organ donation for years, but was inspired to finally take action by fellow Ottawa resident and double lung transplant recipient Hélène Campbell.

Campbell staged a successful organ donation awareness campaign, even spreading her message on the Ellen DeGeneres Show.

“Hélène Campbell had a huge impact on this, because she pretty much blazed the way for all these people to keep doing this as well.”

While Bobbie-Lynn's life isn't easy, she lives as normal a life as possible, holding down a full-time job in the IT field.

For years, she was on traditional dialysis, travelling to an Ottawa hospital three times a week to be hooked up to the machine for four hours at a time.

“With having the dialysis after work, it was very exhausting,” Bobbie-Lynn said. “You don't have a social life. It's hard to balance everything.”

But a few weeks ago, she switched to nocturnal dialysis, meaning that she sleeps at the hospital three times a week while undergoing dialysis for eight hours.

Bobbie-Lynn said she'd like to do home dialysis, but can't because she lives in an apartment building, and a certain amount of renovations are needed to install the necessary equipment, which isn't possible in an apartment.

She said she's already feeling better, because she's getting more hours of dialysis per week.

“I have more energy. I feel like a normal person when I wake up, and I go.”

But dialysis hasn't been without complications for Bobbie-Lynn. In November, a problem with the fistula in her arm, which is used for dialysis access, meant that arm can't be used for dialysis anymore.

Doctors created a temporary dialysis access point, but she now has a blood clot in her upper arm. At a certain point, doctors won't be able to use her arms for dialysis anymore, and could be forced to hook it up on her lower body.

“They can do a lower-body access, but it doesn't work as well, and there's more risk of infection,” she said. “It doesn't last long. They're looking at maybe months, as opposed to years.”

For more information about Bobbie-Lynn's organ donor awareness campaign, visit bobbieskidney.com, facebook.com/groups/bobbielynnkidneyjourney or @BLKidneyJourney on Twitter.