Heart transplant gave family a new beginning
Scott Parsons and his family are thankful for their new life together — and for the unknown young man who made it possible.
Life has taken on a whole new meaning for the Parsons family. Scott Parsons had a heart transplant seven years ago last month and has gained a whole new outlook on the things that matter most — his wife, Jill, and daughter, Rachel. — Photo by Bonnie Learning/The Labradorian
Seven years ago, on Nov. 16, 2006, Scott was on an operating table in the Cardiac Care Unit of the Ottawa Heart Institute, as a specialized team of doctors and nurses worked around the clock to bring him back from the brink of death.
Just 33 at the time, Scott was getting a heart transplant — thanks to the family of a young man in Ontario.
“That 23-year old man who died that day, he gave us our lives back,” said Scott, a quiet, but amiable man, during a recent interview.
“He continued our family story — several families’ stories — with the organs that were donated after his death.”
“Even after his death, part of him lives on,” added Scott’s wife, Jill Parsons. “Day to day, I don’t think about his heart transplant, but every Nov. 16th, we hold a ‘transplant party’ to remember.”
Her outlook on what matters in life has changed since that fateful day seven years ago.
“It doesn’t matter what you have in your bank account or what kind of house you live in,” she said. “All that matters is your health and your family. I don’t think there’s anything in this world that can take away what we have. I think my heart changed with Scott’s that day.”
Scott’s transition from an active young man to a heart transplant patient actually began 17 years ago — in 1996 — when he was 23.
He was playing a recreational soccer game at the Reid Centre in Mount Pearl (he’s originally from St. John’s), when he suffered a massive heart attack and almost literally dropped dead. As fate would have it, another player happened to be a medical student and performed CPR on Scott while an ambulance was called to rush him to the Health Sciences Centre.
After a battery of tests, Scott was diagnosed with aortic right ventricular cardiomyopathy (ARVC) — a genetic disease that has only been found in Newfoundland and Ireland.
“It was actually Scott’s old heart — which we donated for research — that led to the discovery of this gene in the Parsons family,” noted Jill.
“His mother and sister have since been diagnosed, and it’s believed that his grandfather — who died in his early 30s after returning home from World War II — died from this as well.”
Scott’s mother had a heart transplant five years ago and his sister has a defibrillator implant to control her heart rate.
Scott had his own defibrillator implanted after his heart attack and was told he could no longer play contact sports of any kind, nor take part in any kind of rigorous physical activity.
“This disease usually hits athletes hard,” said Jill. “And if undiagnosed, most men (with ARVC) don’t live past their 20s. It affects girls differently; they survive longer.”
Scott spent months at the Miller Centre in St. John’s for rehabilitation, both physical and mental, as he had to relearn how to do practically everything.
“Because his oxygen was cut off (after his heart attack), he suffered from short-term memory loss,” explained Jill. “It was practically non-existent. Even today he has trouble with his short-term memory.”
She credits the Brain Injury Association of Newfoundland and Labrador with helping Scott in his recovery. Finally back on his feet after months of rehab, Scott resumed his job in the maintenance department at the Waterford Hospital, but was no longer able to continue his business studies at Memorial University due to his memory loss.
In 2003, he met Jill through a mutual friend in downtown St. John’s one night. Over time, she got to know the intricacies of Scott’s implant. They would spend the next few years in St. John’s, as Scott had to be close to a major hospital.
“It fired twice between 2003-2006,” said Jill, explaining the defibrillator would send a shock to Scott’s heart when his heart rate was too low or too high, to stabilize it.
“It was very dramatic; he knew when it was going to happen.”
The couple got engaged in 2005, and moved back to Jill’s hometown of North West River, 33 kilometres outside of Happy Valley-Goose Bay, in August 2006.
“Life was normal. (Scott’s heart issue) didn’t cross our minds on a daily basis or anything. He had to see a cardiologist once a year for a checkup.”
The pair had set a wedding date of Sept. 16, 2007, and Jill — along with Scott, and Jill’s close friend Alicia Penashue, headed off to St. John’s so Jill could find “the dress.”
“It was November of 2006,” Jill recalled.
“We were at the movie theatre and Scott’s defibrillator fired three times — he had grabbed my hand and said it was going to go off.”
Scott described the firing of the defibrillator as being “punched as hard as possible in the middle of the back.”
Jill drove Scott to the Health Sciences Centre, thinking perhaps the device had malfunctioned.
She had left the hospital to drop her friend off at the airport, when Scott’s mother called her on her cellphone.
“She told me I had to go back to the hospital right away — his defibrillator had fired 30 times since he had arrived.
“They finally turned it off. His heart was in a high rhythm and they shocked him twice (with paddles). But it still wouldn’t get his heart back to a normal pace.”
Jill said doctors quickly determined there was nothing that could be done for him in St. John’s and made the call to send him to a more specialized location.
“Initially he was supposed to be sent to Halifax, but the weather was bad down there and they ended up taking him to Ottawa, to the Ottawa Heart Institute Cardiac Care Unit,” Jill said.
“They tried a procedure called an ‘ablation’ (a procedure that destroys small areas of the heart that may be causing rhythm problems) but that didn’t work.”
It was Nov. 15. Jill recalls sitting and chatting with Scott’s dad in Scott’s room.
“It was 6:30 p.m. when a bunch of doctors came in and took me and Scott’s father into another room,” she said, adding that’s the first time she was fearful of the situation.
“Two of the doctors told us Scott needed a heart transplant. It was his only chance. Without it, they gave him just 48 hours to live.
“The heart would have to come from a donor who was approximately the same body type, age, had the same blood type and was brain dead in a hospital. The doctors also told us it had been two months since they had been able to do a heart transplant due to lack of donors.”
Jill called her parents back home to explain what was going on. Her father arrived in Ottawa the next morning.
She knew the odds were stacked against Scott. But fate intervened once more.
“Within an hour of being told he needed a transplant, Val — the transplant co-ordinator — called and said they had found a heart,” Jill recalled, noting that Scott had been placed at the top of the transplant list across Canada.
The donor was a young man from Thunder Bay, Ont., who was involved in a tragic bus accident.
Scott’s surgery started at 11 a.m. on Nov. 16.
“I remember it was just like the movies,” said Jill, looking across the room at Scott.
“They wheeled him out of his room — this is the point where you physically say your goodbyes — and he was heavily drugged; most of the stuff he was saying made no sense at all. But there was one lucid moment in all that. He looked at me and said, ‘Jill, I’ll still love you, even with my new heart.’
“Then he was wheeled away.”
Tense hours passed, with regular updates provided by doctors. One doctor told Jill, shortly after surgery began, that Scott had a 10 per cent survival rate.
“It was only in 2006, but so much has advanced with transplants since that time,” said Jill.
At 1 a.m. on Nov. 17, the chief surgeon told Jill that Scott was very sick and might not make it through the night.
“They left his chest open (after the surgery) so they could easily access him if they needed to,” said Jill.
He was left in the operating room for the better part of week, hooked up to 42 different IVs, sternum exposed, and so swollen from fluid retention that Jill didn’t recognize him.
After several weeks of touch-and-go — including infections, kidney failure and a myriad of other serious issues that could have resulted in Scott’s death — he beat the odds and was released in mid-December to Jill’s care in the regular cardio ward at the Ottawa Health Institute.
“He wasn’t doing good, emotionally,” recalled Jill. “He was moody, he couldn’t eat … he would say mean and nasty things. … He was not happy.”
Scott ended up with another infection and ended up back in hospital for a couple of weeks until the infection was diagnosed and treated.
“On Christmas Day, he took another turn downwards. He wasn’t awake at all that day. The doctors woke him up on Dec. 28.
“We took him back up to the regular cardio ward for the second time, and this time, he had a totally different attitude towards his recovery,” Jill said.
“He asked me to help him with his rehabilitation.”
Through the weeks and months that followed, Jill did everything from shower and shave her fiancé, to help him with physiotherapy, including helping him learn to walk again. Scott credits her with his successful recovery.
“I don’t know what would have happened if Jill wasn’t around,” he said. “I don’t think anyone would have taken such good care of me.”
The couple moved back to Happy Valley-Goose Bay in 2007 and were married in Gatineau, Que. on June 16 of that year, seven months after Scott’s transplant, and three months ahead of their original date.
Scott has checkups twice a year and is on anti-rejection medications, likely for the rest of his life.
Jill and Scott do not take their good fortune for granted.
“Trivial things that keep people awake at night? We sleep fine,” said Jill.
“After going through this, you realize what’s important,” Scott added.
In February 2010, Jill gave birth to a daughter, Rachel, their only child.
She was tested almost immediately for the ARVC gene.
Fate intervened again.
“She tested negative,” Jill said.
“It was incredible, it was like a dream come true,” added Scott. “That was our biggest worry when we decided to have a baby — would the baby have the gene?”
“The gene is dead now, in our family,” added Jill, who said they don’t intend to have other children.
Although they can’t personally thank the family of the young man whose life was so tragically cut short that day seven years ago, they hope to pay it forward by encouraging others to become organ donors.
“Checking the box on your driver’s licence means nothing,” said Jill. “If something happens to you, it is your family who will be making the ultimate decision (about organ donation). So talk to your family. Tell them your wishes, should you become ill or something happen.”
“With the death of that 23-year-old man that day, other people’s lives — other families’ lives — got to continue, because of his family’s decision. Now he lives on, as part of our family.”