A red powerboat slices through the choppy water on Grand Lake in Presque Isle, Michigan.
It’s a sunny, windy day, and at the helm, 21-year-old Chase Fairbairn is pushing 60 miles an hour to finish first at the Fireside 500 marathon boat race.
For Chase, an avid outdoorsman and adventurer, it’s not so much the competition that draws him to boat racing. It’s the speed. There was a time not long ago when Chase and his family focused on just one goal.
“He’s very lucky to be alive,” says his dad, Paul. “Every day is a blessing.”
Cardiac Arrest
The first indication that something was wrong with Chase’s heart came in 2011, when he was 11, on the soccer field in his hometown of Harbor Springs in northern Michigan.
Chase went into cardiac arrest, collapsing onto the field during practice. Paul performed chest compressions to resuscitate him. Chase was rushed to the hospital.
He was tested for cardiac issues, but when the test results came back normal, he was diagnosed with severe dehydration and sent home.
His medical providers diagnosed him with cardiomyopathy, a condition in which the heart muscle is abnormal. They implanted a pacemaker and defibrillator. In addition to prescribing Chase multiple heart medications, his care team informed him he could no longer participate in the strenuous activities he loved, like soccer. The idea of life without sports hit Chase hard.
The Fairbairns — Paul, Chase’s mom, Lisa, and brother, Parker — limped along in their new reality. Then, in the summer of 2012, Lisa attended a Mayo Clinic event, where she met Mayo pulmonologist Eric S. Edell, M.D. Dr. Edell not only informed her that her son must be seen by one of his colleagues, but he also emailed genetic cardiologist Michael J. Ackerman, M.D., Ph.D., that night.
Chase had an appointment with Dr. Ackerman days later, and his lifesaving journey began.
“Right from the beginning, Mayo’s approach was, ‘Let’s not let this illness define you," says Lisa. “Dr. Ackerman’s first line of questioning included, ‘Chase, how is your quality of life?’ and ‘What can’t you do that you would like to do?’”
Says Chase: “Everyone at Mayo Clinic is so thorough, brilliant and personable. Everything they talk about, they talk about as a team.”
Journey to Transplant
To help determine what was causing his heart problems, Chase underwent genetic testing for the genes known to trigger his type of cardiomyopathy. The test came back positive, establishing the genetic defect that was causing the disease. Chase had one of the most severe forms of cardiomyopathy — arrhythmogenic right ventricular cardiomyopathy, or ARVC. Not only can ARVC cause heart failure, but it also can cause life-threatening, unpredictable electrical malfunctions of the heart.
The family was devastated. But Dr. Ackerman promised to spend the rest of his life figuring out the disease — and that he’d be with Chase every step of the way. Dr. Ackerman established a long-term treatment plan for Chase. It included the eventual need for a heart transplant.
Two years later, in 2014, Dr. Ackerman informed the Fairbairns that Chase’s heart was simply too unreliable to count on any longer.
“I just remember thinking, it’s time,” says Dr. Ackerman.
On Christmas Eve, Chase’s name was placed on a national waiting list for a transplant. Sixteen months later, on April 16, 2016, the Fairbairns were notified a heart was available for transplant.
Chase and his family arrived at Mayo Clinic four hours after the call.
A New Heart
The transplant went off without a hitch. The next day, Chase was out of bed and sitting in a chair.
He maintained his sense of humor too, requesting fast food in the form of French fries and mashed potatoes for his first postsurgery meal.
"It's just so different at Mayo. There are no egos. They want what's best for the patient - not just medically, but from a broader quality of life perspective too."
Lisa Fairbairn
Within days, his family was able to listen to his new heart beating strongly in his chest. About three months after his transplant, Chase returned home to Michigan.
Soon, the 16-year-old was healthy enough to play soccer for the first time in five years, alongside Parker.
"It was inspiring to see his determination," Parker says of Chase. "I'm just fortunate I was able to be there for my brother."
Classmates hosted fundraisers to benefit Mayo Clinic in Chase's honor and sent him posters with inspirational messages.
The Fairbairns organized a fundraiser called “Chase the Cure,” in which T-shirts were sold at a boat race to support childhood cardiomyopathy research at Mayo Clinic.
Chase and his parents say the outpouring of support from his community and care team helped him through his recovery.
“Throughout this journey, there’s been plenty of difficult news to take in, but it is so comforting to know that there’s an amazing medical system and team behind the scenes working around the clock to deliver best-in-class care for Chase, says Lisa. “I remember all the times Dr. Ackerman would reach out to colleagues across the world for input because Chase’s case was so complex. It’s just so different at Mayo. There are no egos. They want what’s best for the patient – not just medically, but from a broader quality of life perspective too.”
Five Years Later
Since his heart transplant, Chase graduated from high school, started working, and bought his first house, which he is renovating with his dad.
While Chase has hit lots of milestones, his care team, including Brooks S. Edwards, M.D. — a cardiologist on Mayo Clinic’s heart transplant team — will work with him for the rest of his life to strike a delicate balance between preventing his body from rejecting his heart while not oversuppressing his immune system.
Through Mayo Clinic’s Tissue Typing Laboratory, Dr. Edwards and his team carefully study Chase’s type of rejection.
“We use diagnostics that weren’t available 10 years ago,” says Dr. Edwards. “The Tissue Typing Lab has been instrumental in guiding his specific individualized therapy.”
The goal has been to make sure Chase is always able to do the things that bring him joy. And in the five years since his transplant, Chase has been able to do just that — racing boats, snowmobiling, hunting, fishing and most anything else he sets his mind to do.
Lisa and Paul marvel at the way their son has handled his medical journey every step of the way — with calmness, kindness and positivity, never feeling sorry for himself.
“Before he got sick, Chase always approached every aspect of his life with a big heart. Then his illness caused his heart to become big as well. Now, his gifted heart is normal in size, but his zest for life and adventure is bigger than ever,” says Lisa. “He’s handled it all so remarkably. It’s inspiring how he lives his life in the moment.”
And his care team expects Chase to have many more moments in the future.
“Here’s a kid who tried to die several times before transplant," says Dr. Edwards. “Now he’s doing marathon motorboat racing. We expect him to grow old and do well.”
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Eds Note: The individuals featured in images were following social distancing guidelines, and in compliance with Mayo Clinic’s COVID-19 safety guidelines while unmasked.
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