It’s a miraculous story, as after waiting on the heart transplant list for three and a half years, Kynley Kristinnson has finally received her new heart.
Kynley was born with hyperplastic left heart syndrome. Prior to receiving a new heart, she has had four major open-heart surgeries and a dozen heart catheterizations over her seven years. As her heart was failing her, by January of 2020 Kynley had to have a portable oxygen supply, which takes its own toll on lungs.
It was mid-day just over two months ago when the Kristinnson family received the call they had been waiting for.
“We had been praying for that day for 3.5 years, but you are never really ready for that call. It felt so surreal that after SO long - we finally got the call!” says Kynley’s mum, Jody.
And so a new chapter began for the Kristinnson family.
“We called our immediate family to let them know we were on standby.”
The transplant specialists had to ensure that the donor heart was viable. The family was on an emotional rollercoaster. Jody said, “I felt excited, but extremely nervous and scared at the same time.”
The parents told their other two young children that they may have found a heart for Kynley. Confirmation came late that evening, at about 11 p.m. Within three-and -a-half hours Kynley and her parents Blaire and Jody were on the LifeFlight plane leaving Virden for Edmonton.
Grandma Pat came to care for the younger siblings Aiden and Dawson, who were asleep by the time their parents left.
From that day, Kynley spent six weeks in Edmonton’s Stollery Children’s Hospital and then two weeks out of hospital, before the family could return to Manitoba.
Blaire stayed for the first two weeks, but, as a farmer, he had crop to sow. He made many trips back and forth.
WHAT A RELIEF
The 10-hour surgery went well.
“Her heart’s been doing good. They thought she might need some extra life-support coming out of surgery. But she didn’t need any of that… Kynley has only one working lung so that gave us the most trouble,” says Jody.
Her lung wasn’t up to receiving the blood flow from a fully functioning heart. She needed a chest tube for over four weeks to provide drainage for the lung.
It was removed prior to her discharge from hospital. She had to be re-admitted due more complications as her lung worked to grow strong enough to do its work.
Monitoring her progress, a biopsy of the heart, done at the one-month mark, showed no signs of rejection. The next check-up will be in October.
As her new heart and her body get used to each other, a plethora of drugs are required. “She’s on 14 different medications, that’s what we came home on. It is very expensive… so far roughly $2,000 out of pocket. We’ve only been out of hospital a month,” says Jody.
“We learned that children in Alberta and Saskatchewan do not pay for these medications, because they’re essential drugs.” However, in Manitoba, families are on their own.
Jody is a lab technician, but with the very precise schedule, returning to work is not in the cards right now.
Kynley is currently fed through a stomach tube at hour and a-half intervals through the day. There’s also a timed protocol for meds - Jody sets her phone alarms to stay on schedule.
There has been lots to learn. “Food safety is very important for people who are immuno-suppressed.”
The Kristinnsons are an active family, but Kynley can’t go swimming for six months. “She’s looking forward to doing things that she was always too short of breath to do,” says Jody. “We’re thinking of new things. We’ve gone to some parks and riding a bike and going on a trampoline.”
Kynley and her mother had the fun of a drive-by visit to see her classmates at Goulter School.
“She was very surprised and excited. The school arranged for a convertible car so she could sit back and hear everybody welcome her home.”
School secretary Janet White arranged for them to borrow her mother’s vehicle for the open-air drive.
As her future unfolds and Kynley turns eight in August, she is headed for Gr. 3 in the fall if all goes well. “I’m hopeful that she will get to go back to school in the fall. October will be the six-month mark.”
The first six months are the most critical as her body accepts the heart. After that, she will be weaned off some drugs, but anti-rejection drugs will be a lifelong regime.
Now that they’re home Jody says even simple things like sleeping in their own bed is a treat after weeks of hospital life.
“We’re certainly excited to be on the other side of the journey, but it’s still stressful, trying to get your groove… coming home to kids who haven’t seen me for two months and are clingy.”
Jody marvels at the support that Virden Lions Club provided and their ongoing interest. “I lost both my grandpas. It’s nice to have someone like that,” she says of Len Collier.
“There were a lot of prayers going up for us. Thank God for answered prayer – the big one.This new heart gave her a new chance at life, as only time could tell how long her native heart could have sustained her with oxygen levels that low,” says Jody.
“Of course, we wouldn't have this second chance without her donor. We are eternally grateful for a family saying ‘yes’ to organ donation.”