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January 20, 2015
As a lifelong runner, when Ray Jonasson competed in races at any distance from 800M through marathon, he was accustomed to doing well. A three time Ontario Masters champion, he was energized with each run, always aiming for a top three finish. So when Jonasson found himself exhausted part way through a 5K race in 1996, he was puzzled. When he collapsed at the finish line, he was concerned. And as he sat in his doctor’s office, hearing his diagnosis of primary sclerosing cholangitis (PSC), he couldn’t help but be scared.
PSC is a disease of the bile ducts that cause inflammation and subsequent obstruction of the ducts. It is progressive, and can lead to tumours of the bile duct or liver and liver failure. The obstructions decrease the amount of energy the liver can provide. The only cure for the disease is a liver transplant.
“Being told you have an illness that will only get worse, and not get better, throws you for a loop. I have always been very competitive, and knew I needed to use all that competitive energy to beat this,” said Jonasson. A complete lifestyle change followed; he quit running and closed his business. His goal became to see his daughter, Elizabeth, who was then in primary school, graduate from university.
The deterioration for Jonasson was slow, but impacted all aspects of life nonetheless. In 2008, his mission took on greater urgency when a severe liver infection became the turning point that saw Jonasson added to the transplant list. From there, the struggle became deadly serious. His family watched helplessly as Jonasson's health deteriorated. He lost weight and strength, became jaundiced, endured itching that caused him to wake up with fingers bloodied from scratching, had fluid retention cause his ankles to swell until they would not bend, and required transfusions because his blood would no longer clot.
“At that point, my goal was two years. I only needed to live for two more years,” said Jonasson. Two more years would mean watching his daughter walk across the stage to receive her university diploma. “I needed someone to say ‘yes’ to being an organ donor so that I could see her graduate and know that she would be alright.”
For Jonasson’s transplant surgeon, Dr. Roberto Hernandez-Alejandro, someone ‘saying yes’ to giving the gift of life is something he hopes for his patients daily. “It is difficult to see patients who have been so active and so well their entire lives be faced with the devastating effects of end-stage liver disease. Their only hope to return to a normal life is a liver transplant and waiting for this is more difficult than anyone can imagine. In fact, one in five patients on the list will die before getting their new chance at life. Mr. Jonasson was one of the fortunate ones … and this was only possible because someone out there said ‘yes’ to organ donation.”
The call came in July of 2011 – there was a liver available and it was on its way to London for Jonasson. It was just in the nick of time, as his health had been deteriorating rapidly in the weeks before.
“I know I was very fortunate that an organ came along when it did. I knew how sick I was. But somebody said ‘yes’, and because of that, I am here and I am committed to using my gift of life to help others understand the importance of organ donation,” said Jonasson. And most importantly for Jonasson, when Elizabeth came off the stage with her degree in May, 2013, he was there to hug her. He had made it.
“Mr. Jonasson is one of the most passionate advocates for organ donation awareness that I’ve met,” said Dr. Hernandez-Alejandro. “It has been very rewarding to see all that he has accomplished post-transplant, and I know that he will continue to do all that he can to ensure every patient waiting for an organ in this country receives the same opportunity.”
Having had a few non-transplant related health challenges during the past few months, Jonasson will soon be taking a break to recover at his daughter's home in California before travelling with her on a vacation to South America. "For too many years, I had to stay near the hospital or lose my place on the transplant list,"Jonasson explains. "Now it is time to truly enjoy every extra day that I have been given and what better way than with the person who was my reason for hanging on during those challenging times as I waited for my gift of life?"
Ray Jonasson, displaying medals he has won since his transplant in 2011, stands surrounded by his LHSC transplant care team.