‘Alive, but not living’: Dialysis patient turns to social media

Days into the new year, while many people were heading to the gym and blending their kale smoothies, Tim Nickerson was sitting in front of his computer, typing up a classified ad. He had a resolution of his own: to find a new kidney.

In early November 2011, Nickerson woke up with “weird, cramping pains” in his body. Hours later, he was in the hospital being told that, at the age of 34, his kidneys were failing.

“The average human being’s creatinine levels should be at 100,” said Nickerson. “Mine was at 1,000.”

Nickerson says the news came as a “real shock”, even though he knew it was coming. More than a decade earlier, he had been diagnosed with Polycystic kidney disease, a genetic disorder that often results in kidney failure.

As his condition worsened, Nickerson was unable to keep up at work. It wasn’t long before he lost his job.

“The first year was really rough because E.I. only went so far,” he said. “I was financially destroyed, having no money to pay my bills, trying to survive…”

Nickerson knew that in order to reclaim his life, he desperately needed a new kidney.

That’s why he turned to Kijiji.

“[I thought], why not post an ad here and see what happens?” asked Nickerson. “I want people to stand up and say, ‘Hey, I’m willing to give a kidney.’”

And not just to him. He says his ad speaks to “anyone who’s willing to donate to someone who needs a kidney.”

Ever since Nickerson’s diagnosis, it’s been a fight for his life. He’s undergone several operations, suffered two heart attacks and been hooked up to a dialysis machine for 12 hours a week for the last four years.

“I’ve literally sat in that chair crying in pain from the cramping,” he said. “On dialysis, I’m alive but I’m not living.”

Donation decline

While the number of organ donations in the U.S. is on the rise, donations in Canada have stagnated over the last five years.

Tony Kuritsis, a spokesperson for Nova Scotia’s Department of Health and Wellness, says organ donations across the province have actually decreased.

“We’ve definitely been experiencing a steady decline,” said Kuritsis. Data from the Department of Health and Wellness shows that the total number of donors of both living and deceased organs and tissue have decreased by almost 25 per cent in the last five years.

Living organ donors are even fewer, having decreased by more than 50 per cent since 2011. Kuritsis says last year, there were only five donors in the whole province.  

“It’s been four years and I’m still trying [to get a kidney],” said Nickerson. “Every time I go to dialysis, I ask the doctors about a transplant and nothing.”

Kuritsis says that, as of Jan. 4, 2016 there were 132 Nova Scotians waiting for organs.

‘It’s up to us’

Like Nickerson, a lot of desperate transplant patients and their loved ones are turning to social media to rally the public and take their health—and livelihoods—into their own hands.

Posts and pages from the dialysis community, like this one, have gone viral. “Little Warrior Zaccari”—a baby from a Quebec family that has been treated at Halifax’s IWK—has been ‘liked’ more than 1,500 times.

Baby Zaccari’s mother, Ashley Barnaby, told the CBC that she was inspired to create the page for her son so that “people can follow his journey.” She hopes it “will help other parents facing difficult medical challenges.”

There are thousands of other examples of patients seeking support—or kidneys—from the wider online community on social media sites like GoFundMe, Facebook, and Kiiji.

“A little more awareness”

Nickerson says, if nothing else, he hopes his post will help spread an important message.

“At this point, I’m not worried anymore if I get a transplant or not,” he said. “If it happens, it happens. I just hope to achieve a little more awareness for people on dialysis.”

Nickerson says he wants people to understand their organs can help a lot of people.

“If you don’t fill out your organ donation card, people will end up suffering. People have to be made aware of that. [It’s] the least you could do.”

To find out how to be an organ donor, visit the Nova Scotia Organ and Tissue Donation Program’s Legacy of Life.