September 26, 2020


BY BRAD COUGHLIN
It was late 1996 when the disease made its first appearance. Running the Ancaster Mill Race in his hometown, Ray Jonasson was passed on a big hill; an incline no one had beat him on before.
“I was more exhausted than any marathon I’d run,” said Jonasson, once a highly competitive runner. “I focused all my efforts on getting to the finish line without doing a face plant.”
Just three days earlier the runner had tested himself at another race, won and run his fastest ever. So, when he collapsed for 45 minutes and missed the final ceremony, Jonasson attributed it to an oncoming cold.
“When your symptoms are being tired, those aren’t symptoms you go to the doctor for,” said Jonasson.
But, his low energy persisted longer than any common cold would and the runner finally went to his physician.
That’s when they found it. Blood work came back, results were off the chart and everything pointed to Jonasson’s liver – he had primary sclerosing cholangitis (PSC), a chronic liver disease.
The only cure was a transplant, so he was put on the transplant list – a wait he’d need more than marathon endurance for.
“You have to get very sick before you even make it, and then you hang on for your dear life and try not to get too sick to fall off,” said Jonasson. “There’s a shortage.”
He lost his marriage and business and completely rearranged his life during the 15-year wait for a new liver, but in July 2011, Jonasson finally received one at the London Health Sciences Centre.
Now, having gotten back to running and having completed this year’s Ancaster Mill Race, Jonasson speaks about organ and tissue donation every chance he gets.
“It is literally the difference between life and death,” he said. “If that person’s family had said no, it would have been game over.”
Currently, only 22 per cent of all eligible Ontarians are registered for organ and tissue donation through the Trillium Gift of Life Network (TGLN). However, Kitchener currently has 28 per cent registered.
“In the last four years the number of registrations has gone up … but we still have a long way to go,” said Ronnie Gavsie, president and CEO of TGLN. “Twenty-eight per cent leaves a lot of people not registered and so many (patients) on the wait list without hope.”
Gavsie credits some of the increases in donation to the new registration methods. Due to situations when donor cards may have been lost, a registration database was created. Donors can now sign up via www.beadonor.ca, at a Service Ontario centre, or by downloading a mailing form.
Along with various types of advertising, the TGLN is promoting donating online through their Gift of Eight pages.
“A Gift of Eight page is a personal or organizational page where you can state your commitment to donation and you send that page to others and ask others to register through it,” said Gavsie. “One organ donor can save eight lives.”
The TGLN is also working hard to dispel myths about organ and tissue donation that lower the registration numbers. All major religions support donation, nobody is precluded due to previous illnesses and no one is too old to be a donor said Gavsie, correcting common myths.
“Medical expertise and technology is improving constantly so transplant has become the life-saving procedure available to us for more and more conditions,” said Gavsie. “We don’t expect the wait list to go down and we know the number of transplants would go up dramatically if we had enough organs and tissue to meet the demand.”
Jonasson uses the war in Afghanistan to make his point. From 2001 to 2011, 158 soldiers died in the Afghan war – they were celebrated and commemorated. But, in that same amount of time, 2,621 Canadian citizens died while waiting for organ and tissue transplants.
“All the people on the wait list now look at the fact that only 22 per cent of eligible Ontarians are registered,” said Gavsie. “To them, the message is that three out of four people don’t care.”