‘He continued our story’

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Labrador man is living proof of how a precious ‘gift of life’ can create a new beginning

Life has taken on a whole new meaning for the Parsons’ family. Scott Parsons underwent 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.

Scott Parsons and his family are thankful for their new life together — and for the unknown young man who made it possible.

It was seven years ago — on Nov. 16th of 2006 — that Scott was on an operating table at the Cardiac Care Unit of the Ottawa Heart Institute, while a specialized team of doctors and nurses worked around the clock to bring him back from the brink of death.

Just 33 years old 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, who is a very quiet, but amiable man — in a recent interview with The Labradorian.

“He continued our family story — several family’s stories — with the organs that were donated after his death.”

“Even after his death, part of him lives on,” added Scott’s wife, Jill.

“Day to day, I don’t think about his heart transplant, but every Nov. 16th, we hold a ‘transplant party’ to remember.”

She added 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.”

In the genes

Scott’s dramatic story from an active young man to a heart transplant patient actually began 17 years ago — in 1996 — when he was 23 years old.

While playing a recreational soccer game at the Reid Centre in Mount Pearl (Scott is originally from St. John’s), he literally almost dropped dead when he suffered a massive heart attack.

As fate would have it, another player on the floor that day happened to be a medical student, and performed lifesaving CPR on Scott while an ambulance was called to transport him to the Health Sciences Centre.

After going through 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 30’s after returning home from WWII — died from this as well.”

Jill noted Scott’s mother had her own heart transplant five years ago and his sister has a defibrillator implanted 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 again.

“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 studies at the MUN Business School due to his memory loss.

As the years went on, Scott went about his life with his defibrillator keeping his heart rate under control.

Bad news

In 2003, he met Jill through a mutual friend while 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 by to a major hospital.

“It fired twice between 2003-2006,” said Jill, explaining the defibrillator would send a shock to his heart, when his heart rate was too low or too high, in order to stabilize it.

“It was very dramatic; he knew when it was going to happen.”

The couple got engaged in 2005, and had moved back to Jill’s hometown of North West River in August of 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 in the events leading up to Scott’s transplant.

“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.”

Jill helped Scott out of the theatre as quickly as she could. Scott described the firing of the defibrillator as being ‘punched as hard as possible in the middle of the back.’”

Jill managed to drive Scott to the Health Sciences Centre, not thinking much more of it then it being a malfunction in the device.

She left the hospital to drop her friend off at the airport, when his mother called her on her cell phone.

“She told me I had to go back to the hospital right away — his defibrillator had fired an astounding 30 times since he had arrived.

“They finally turned it off. His heart was in a high rhythm and they shocked him twice (with the 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 for further treatment and tests.

“Initially, he was supposed to be sent to Halifax, but the weather was down there, and they ended up taking him to Ottawa, to the Ottawa Heart Institute Cardiac Care Unit,” said Jill.

“They tried a procedure called an ‘ablation’ (a procedure that is used to destroy small areas in the heart that may be causing heart rhythm problems) but that didn’t work.”

At this point, it was now Nov. 15th.

Jill recalls she and her now father-in-law, just sitting and chatting while visiting Scott in his room.

“It was 6:30 p.m. when a bunch of doctors came in and took me and Scott’s father into another room,” said Jill, adding that was the first time she started feeling fear about the whole 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.”

Jill said ‘all the stars had to line up’ in order for Scott to get a donor heart.

“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, with many extended family members at her parent’s house for comfort and support. Her father arrived in Ottawa the very next morning.

Jill left the hospital shortly after getting the grim news that evening to stay with a family member and to try to get some rest. 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 coordinator —  called and said they had found a heart,” Jill recalled, noting that Scott had been placed at the very top of the transplant list for across Canada the night of Nov. 15th, 2006.

“A donor had been listed within a hour.”

The donor would be the young man from Ontario who was involved in a tragic accident.

Scott’s surgery started at 11 a.m. on Nov. 16th.

“I remember it was just like the movies,” said Jill, as she looked 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.”

 

‘Beat the odds’

Many tense hours passed, with updates being provided on a regular basis by doctors. One doctor told Jill — shortly after surgery began — that Scott had just 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 he wasn’t sure if he would even 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, Jill said she couldn’t even recognize him.

However, 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, his moods were erratic, 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 more 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. 28th.

“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 noted. “He asked me to help him with his rehabilitation.”

Through the weeks and months that followed, Jill did everything from shower and shave her fiancée, to help him with his physiotherapy, including helping him learn how to walk again.

Scott credits his wife with his successful recovery.

“I don’t know what would have happened if Jill wasn’t around,” said Scott. “I don’t think anyone would have taken such good care of me.”

The couple moved back Happy Valley-Goose Bay in 2007 and were married in Gatineau on June 16th of that year, just seven months after Scott’s transplant, and three months ahead of their original date.

Scott has regular check-ups twice a year and is on anti-rejection medications, likely, for the rest of his life.

Full circle

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,” added Scott.

On Feb. 1st, 2010, Jill gave birth to their only child, Rachel.

Jill said she was tested almost immediately for the ARVC gene.

Fate intervened one last time.

“She tested negative,” recalled Jill.

“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 Rachel will remain their one and only child.

Although both Jill and Scott cannot 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 an organ donor.

“Checking the box on your drivers license 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.”

Scott agrees.

“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.”

whg-editor@tc.tc

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  • patricia
    December 08, 2013 - 17:10

    I was very moved by the story of the Parsons family, having gone through somewhat the same when my 30 year old daughter had to have a kidney transplant in 2001.The experience and the thankfulness for the donor is something we were unable to speak in words.Like Mr.Parsons, that donor gave us back our daughter.we too realize the important things in life now and don't get caught up in everyday frivolous little things. Organ donation is the Greatest Gift of all.

  • patricia
    December 08, 2013 - 17:08

    I was very moved by the story of the Parsons family, having gone through somewhat the same when my 30 year old daughter had to have a kidney transplant in 2001.The experience and the thankfulness for the donor is something we were unable to speak in words.Like Mr.Parsons, that donor gave us back our daughter.we too realize the important things in life now and don't get caught up in everyday frivolous little things. Organ donation is the Greatest Gift of all.

  • Connie Morrell
    December 04, 2013 - 19:49

    This is such a touching story Jill and Scott!! It is so wonderful the family of that young man made the decision to help your family. It was so very sad that they lost their son, but wonderful that Scott got another chance!! Love and Hugs to you, Scott and Rachel.

  • Connie Morrell
    December 04, 2013 - 19:46

    This is such a touching story Jill and Scott!! It is so wonderful the family of that young man made the decision to help your family. It was so very sad that they lost their son, but wonderful that Scott got another chance!! Love and Hugs to you, Scott and Rachel.

  • Connie Morrell
    December 04, 2013 - 19:45

    This is such a touching story Jill and Scott!! It is so wonderful the family of that young man made the decision to help your family. It was so very sad that they lost their son, but wonderful that Scott got another chance!! Love and Hugs to you, Scott and Rachel.

  • Connie Morrell
    December 04, 2013 - 19:44

    This is such a touching story Jill and Scott!! It is so wonderful the family of that young man made the decision to help your family. It was so very sad that they lost their son, but wonderful that Scott got another chance!! Love and Hugs to you, Scott and Rachel.

  • Axelle Bertrand
    December 04, 2013 - 06:46

    This is such an amazing story, for sure he got the heart of a good person that continue to live in your wonderful family with your gorgeous little princess. thanks to share your story make us realise how lucky we are to be alive and in good health. wish you guys all the best in your life.

  • shelia decker
    December 03, 2013 - 20:40

    WOW, totally touching story. Sooo glad your husband had fight in him, i'm sure the young man who owned the heart was fighting right along side with him. You do a wonderful thing by celebrating that day for both your husband and the heart donor who live's on inside him, congratulation on the success of the transplant any hope you have many more happy yrs left to share. take care and god bless

  • Scott Parsons
    December 03, 2013 - 15:07

    Great Job Bonnie!