Joan Woikin has been waiting for a new kidney for six years.
The long-time Nelson volunteer recently stepped down from her role helping to organize the local Special Olympics with her husband Bill because her health is deteriorating, and she’s getting increasingly discouraged as one opportunity after another passes her by.
“Every time I get close to getting a kidney I get sick,” the 66-year-old told the Star, noting she’s had a few close calls when organs became available but is waiting for a doctor to give her the go-ahead for surgery.
“I try to stay positive and say tomorrow’s another day, we’ll do something else. I have B-negative blood, though, which is rare, and there’s hundreds of people waiting for a kidney transplant in B.C. so right now I just have to wait.”
Woikin has lived in Nelson with her husband Bill for the last 45 years. Complicating her situation is a stroke she suffered a few months ago, and the stress and grief of losing her son recently. She hasn’t been able to find a living donor yet, so sitting on the waiting list for a cadaver kidney is currently her only option.
It often feels like she can’t wait much longer. And she’s not the only one — according to the BC Transplant website, there are over 600 people on the province’s waiting list.
‘Kidney disease is insidious’
Heather Johnson has been working for B.C.’s Kidney Foundation for over 10 years now, and since she’s living with Type 1 diabetes and could one day need a transplant, she has a personal connection to her work.
“Kidney disease is insidious, because it’s pretty silent in its symptoms. People will get the diagnosis and say, ‘But how could that be, I feel perfectly fine?’ while meanwhile their kidney is only functioning at 20 per cent,” she said.
And that’s only the beginning of their trouble — though there’s a waiting list for cadaver kidneys, the onus is on patients to source their own living donor, which can be awkward. If possible, Johnson always recommends trying to find a living donor, but she knows that’s a big ask.
“I know it sounds extremely daunting. People don’t want to go out and just ask people, but the best course of action for someone who needs a kidney is a living donor. You can plan for surgery and prepare yourself rather than getting a call in the middle of the night that you have to go to Vancouver,” she said.
She has seen plenty of examples of people receiving kidneys from relatives, friends and even strangers. The Kidney Foundation also has a number of options to help people pair with donors, including through their Living Donor Mentor Program.
“There might be a lot of people out there who would like to help Joan, but they may feel that it’s scary and they don’t know what’s going to be involved,” she said.
“With our peer support training we get people who not only selflessly gave a kidney, but who are also willing to be a part of our program and mentor someone else.”
How to reach out for help
Woikin has done everything she can to find a living donor, but sometimes it’s too much to ask to even get out of bed.
“I feel tired all the time. I would love to be able to go and run, but I can barely walk a mile. I can walk on Baker Street but I have to be really careful,” she said.
That’s a far cry from the lifestyle she grew up with on the farm, where she had multiple siblings.
“I used to chase my brother with an axe. They were here to visit in Kaslo for a high school reunion and my brothers would laugh about how I used to be up in the trees throwing apples at them.”
Johnson believes there’s hope, and new options.
“We now have something called the paired exchange program, so if I want to donate to you but we’re not a match and there’s somebody in Calgary who wants to give a kidney to someone else and they’re not a match, then we can swap,” she said.
“Now it’s become so there’s chains of people, maybe six people across the country who donate and then six people get a kidney.”
Once the transplant’s ready to go, her foundation also has programs to support those with low-income and to give them somewhere to live while they’re recovering — they call them kidney suites.
“We will jump through all kinds of hoops to help you get the treatment you need,” she said.
Successfully getting a transplant and then healing afterwards can be a laborious process, involving spending months away from home, but Woikin’s not giving up, no matter how hard it gets.
“We have our 47th wedding anniversary in November. I said I don’t care if I don’t get anything — I just want my kidney.”