A Saint John woman who made a social media plea last year for someone to donate a kidney to her is still waiting and hoping.
Kara Phinney was born with small kidneys. She said her health has been pretty good since childhood, despite numerous medical appointments and constant bloodwork.
“I’m working two jobs, so, I mean, I’m doing okay,” said the 26-year-old.
“You have your good and bad days.”
A bad day can include extreme fatigue, among other things.
Phinney has been on home dialysis for more than year. It runs nine hours per day. She said she does it at night and sleeps through the majority of it, but it does wake her up if she inadvertently rolls over on the tubing.
Phinney’s mother, Patti, went through a lengthy testing process to become a potential donor for her daughter, but was rejected.
“All in all it was quite a disappointment, thinking you’re going to give her this gift and it’s not going to happen,” Patti Phinney said.
“And then, you know, what’s the next phase?”
Just over a year ago, Kara posted a plea on Facebook asking for someone to donate a kidney to her. She said it was shared thousands of times, and got another round of shares when it popped up as a memory on her profile.
She said she turned to social media to help raise awareness about the need for donations, both for herself and others.
“I don’t really tell people about it,” Kara said of her condition.
“A lot of people found out from it because you don’t really see that I’m sick. It looks like everything is fine, but it’s not.”
Interim Health Services Manager of the Multi-Organ Transplant Program (MOTP) of Atlantic Canada Shelby Kennedy said social media is becoming a more common way for people seeking organs to try to find someone willing to make a live donation.
However, she cautioned that some posts include too much personal information, which could be misused.
Kennedy said she sees merit in the use of social media, but stressed that it needs to be done safely.
“So we’re trying to work with recipient and donor sides to make that more of an option if that’s the route that you choose to go to try to get a transplant,” Kennedy said.
“We’ve seen some successes across Canada with those, but we have not seen it happen here in Atlantic Canada.”
MOTP performs all transplants for Atlantic Canadians in Halifax. Kennedy said there have been nine kidney transplants on New Brunswick residents in 2020, including two live donations.
She admits that’s about half the usual figure for this time of year, but the numbers were impacted by COVID-19-related cancellations of all transplants for more than six weeks.
The Phinneys are hopeful New Brunswick follows Nova Scotia’s lead in enacting a presumed consent law, which will require people to opt out of donating organs, rather than opting in.
That Nova Scotia law comes into effect in January.
“I think it’s going to help a lot of people,” Kara said.
“I think it’s fantastic,” said Patti. “And I think they’re going to have to encourage doctors and specialists to come to Halifax to be able to perform (these surgeries).”
Kara’s brother-in-law is now being tested to see if he could donate to her. He went through testing once before, but the tests expired and had to be redone.
As she seeks a live donor, Kara is not on the wait list for a kidney from a deceased person. She said people on the wait list have to drop everything and rush to the hospital once they get the call that a kidney is available for them.
As long as she stays reasonably healthy, she said, she’ll continue to aim for a live donor.
“You get stressful some days,” she said. “I think if you overthink about it, is when it gets a little more stressful and frustrating.
“And it is frustrating, you know. It’s a wait.”