The perfect antidote to a congenital heart defect: running

The idea of running sounded terrible at first to Matt Johnson. Then, he fell in love with the sport and ran marathons. Now, trail running is keeping him sane during the COVID-19 pandemic.
September 23, 2020
Matt Johnston learned as a young adult that he had a congenital heart defect and took up running. Here, he runs through an aspen grove.
When Matt Johnston learned as a young adult that he had been born with a heart defect, his doctor encouraged him to take up running. He worked up to marathons and now has taken up trail running during the pandemic. Photo by Cyrus McCrimmon for UCHealth.

Matt Johnston was born with a heart defect, but never knew he had one until a physical in college.

The doctor did an EKG and asked how long Matt had had a heart murmur.

“What heart murmur?” Matt responded.

He later saw a specialist who cares for children and adults with congenital heart defects. Dr. Amber Khanna practices at both UCHealth University of Colorado Hospital and Children’s Hospital Colorado on the Anschutz Medical Campus in Aurora.

When Matt asked Khanna how he could best stay healthy despite his heart condition, she gave him an answer that surprised him: “Run.”

That advice would change the course of Matt’s life.

Born with a heart defect: Initially, the idea of running sounded ‘terrible’

Matt wasn’t a couch potato. But, he hadn’t exactly been training for the Olympics either. He had grown up playing soccer, but he wasn’t a big fan of running.

The thought of seriously taking up the sport intimidated him. But Khanna told him that keeping his heart healthy could postpone the heart valve surgery he would someday need.

running with a heart defect - Matt Johnston during a race at Canyonlands National Park.
At first, the idea of running with a heart defect sounded terrible to Matt Johnston. Then, he fell in love with the sport and started running in races, like this one in Canyonlands National Park. Photo courtesy of Matt Johnston.

As fate would have it, Matt’s aunt was into running. She was doing a half-marathon in Las Vegas about three months later, and when Matt shared his doctor’s thoughts with her, she immediately signed Matt up to run the race.

“The most I had ever run was two miles. The thought of running further was terrible,” Matt recalled.

He was then 23 and “not fit at all.”

Nonetheless, his aunt gave him a training guide for half marathons and he reluctantly followed it.

“It was miserable. There were nights when I would work late. I’d have to get on the treadmill at work. I knew I had to train, but it definitely was not my favorite thing,” said Matt, now 31.

Then, an unexpected thing happened. He made it to Las Vegas, did the race and toward the end, felt a jolt of joy.

“Wow. I really want to do this again,” he thought to himself.

born with a heart defect, Matt Johnston took up running. Here he poses in Denver's City Park
At first, Matt Johnston hated running. Then, he fell in love with the sport. He runs in all seasons and until the pandemic, Matt combined his love of travel and running with marathons around the world. Here, he stretches before a winter run at Denver’s City Park. Photo by Cyrus McCrimmon for UCHealth.

Matt became hooked on running and since has done marathons and other races around the world. He loves traveling and running. Fusing the two passions has kept him healthy while taking him to beautiful places.

And, inspired by his mom, a retired Army nurse, Matt is now a traveling nurse who manages operating rooms around the U.S. His current assignment has him back in his hometown of Denver, where he’s working at Children’s Hospital Colorado.

Matt had hoped to run a marathon in October in Dublin, Ireland. But the pandemic has forced the cancellation of nearly all races. To stay fit and motivated now, Matt has taken up trail running.

Matt Johnston took up running to stay healthy after learning he had been born with a heart defect. To stay fit during the pandemic, he has taken up trail running.
Matt Johnston had been running marathons around the world until the pandemic limited travel and forced the cancellation of nearly all races. Now Matt is an avid trail runner. On crowded trails, he runs with a mask. He wants to protect others who may have pre-existing conditions, like he does. Photo by Cyrus McCrimmon for UCHealth.

He credits his medical team with keeping him alive and helping him finding meaning in his life.

First, there was the doctor who found the heart defect.

“It’s crazy. If I hadn’t been diagnosed, within a few years, it probably would have killed me.”

Then, Khanna supported a love of running and has been keeping Matt healthy for years.

More recently, Matt needed surgery for his heart defect. That’s when he turned to Dr. T. Brett Reece, a cardiothoracic surgeon at University of Colorado Hospital. He’s also a professor of surgery at the University of Colorado School of Medicine and director of the Thoracic Aortic Program, one of the top-rated heart surgery programs in the country.

“He’s the best there is,” Matt said of Reece. “The heart team is second to none.”

Last October, Reece implanted a mechanical valve to replace Matt’s faulty valve and now, his outlook is excellent.

“There’s a good chance I won’t need surgery again for the rest of my life,” Matt said.

Ten surgeries before age 10

Never needing another surgery would be especially welcome because Matt came into the world requiring more than his share of medical attention.

Along with the heart defect, Matt was born with a cleft palate, which causes a hole in the roof of the mouth.

Matt Johnston as a baby. He was born with a cleft palate and a heart defect that later prompted him to take up running.
Matt Johnston was born with a cleft palate and needed 10 surgeries before age 10. Photo courtesy of Matt Johnston.

“From newborn to age 10, I probably had 10 surgeries,” Matt said.

He doesn’t remember the first ones.

“But my last few were a little rough,” he said.

Still, the experiences forged his personality and his career.

“I think it made me stronger, especially being an OR nurse. For a couple of years, I did organ transplant surgeries. You have to have a thick skin. It’s a very stressful environment,” Matt said.

He had his childhood surgeries at Children’s, where he is now working.

Getting to help children with medical challenges has brought Matt a deep sense of mission and gratitude.

“I love working in pediatrics. I see myself in a lot of my patients,” Matt said. “I’ve become a better nurse. My surgery reminded me what the process is like for patients.

“People see my scar. I know what it’s like. I can tell patients, ‘you’re going to be ok.’”

Heart valve defect causes blood to flow the wrong way

Dr. Khanna first saw Matt in 2012, about a year after he learned about his heart defect.

He had what’s known as a bicuspid aortic valve, a defect that often runs in families.

“It’s the most common type of heart defect. It affects 1-to-2% of the population,” Khanna said.

profile picture of Dr. Amber khanna
Dr. Amber Khanna has treated Matt Johnston for years for a congenital heart defect. She surprised Matt by encouraging him to run. Photo by UCHealth.

Aortic valves allow oxygen-rich blood to flow from the heart to the aorta. Valves are made of strong, thin flaps of tissue called leaflets. It’s normal to have three leaflets, but people like Matt are born with just two of the three leaflets.

“The defect causes different things in different people,” Khanna said.

“Sometimes, the valve works fine. Sometimes it opens nice and wide and seals shut tight. Matt’s problem was with leaking. The aortic door opened, but didn’t shut well. When his heart was pumping, it worked fine. But when the heart relaxes and collects more blood from the lungs, blood was backing up from his aorta into the heart,” Khanna said. “It makes it inefficient to pump. The heart has to work harder to deal with it.”

When doctors listen to a patient’s heart, they can hear the blood flowing backwards.

That’s the murmur.

“A murmur just means that we hear blood flowing,” Khanna said.

People can live with leaky heart valves for many years. That’s what Matt did until he recently needed surgery.

“Eventually, the extra work puts a strain on the heart. It gets bigger and bigger and this enlargement may cause permanent damage,” Khanna said.

She believes Matt’s fitness helped him postpone necessary heart valve surgery for years.

Is it safe to run with a heart defect?

Many people assume that physical exertion is dangerous for people with heart defects.

In fact, the opposite can be true.

“Physical activity absolutely is helpful,” Khanna said. “It’s good to make your heart work. Aerobic exercise is really good for the heart muscle. Everybody should move for at least 30-45 minutes a day.”

After closely monitoring Matt for years, Khanna last spring said it was time for Matt to have surgery.

She knew it would be tough. All heart surgeries are difficult. But young athletes like Matt do better.

“His level of physical fitness going into surgery made a world of difference in how well he recovered,” Khanna said

A necessary surgery to fix a heart defect. Thanks to running, a great outcome.

Matt had worked in the ORs at University of Colorado Hospital and long had admired Reece, who works closely with Khanna.

“Our multidisciplinary team is critical to all of this,” Reece said. “Dr. Khanna and I are on the same page. That makes it so much easier. We would have loved to have saved Matt’s native valve. Our goal for every one of these aortic patients is to keep their valve as long as possible.”

profile photo of Dr. Brett Reece.
Dr. Brett Reece. Photo by UCHealth.

Matt, however, was at risk for an aortic rupture.

“The outcomes of dealing with that emergently are 10-fold worse,” Reece said. “Any time we can do this surgery preemptively, compared to an emergency operation, is much better.”

Medical experts don’t know exactly why the aorta becomes so large when people have the kind of heart defect Matt has, Reece said.

What is clear is that it’s not working the way it should.

Reece said to picture a house with a mudroom.

“The aortic root is like the mudroom,” Reece said.

The valve is like the door into that room, but it doesn’t have the proper flat shape that a door should.

“So, it doesn’t close as well as it should,” Reece said. “Most people tolerate (this imperfection) pretty well until they don’t. They fall off the edge once they start having symptoms.”

Matt Johnston eventually needed surgery for a congenital heart defect. He recovered faster because he's so fit from running.
Matt Johnston knew he would someday need heart valve surgery. He put it off for years by staying fit and running, An OR nurse, Johnston chose his team at University of Colorado Hospital and recovered well thanks to his fitness going into surgery. Photo courtesy of Matt Johnston.

And that can be very dangerous. Between 10 and 20% of people whose aortas rupture die, Reece said.

Matt had postponed surgery as long as possible and thankfully, it went perfectly.

“It was very straightforward,” Reece said. “My philosophy is to get in and out as quickly as I can, without cutting any corners.”

Patients do best when they are on a heart bypass machine for as little time as possible.

“Matt was on the bypass for less than an hour-and-a-half, which is the shortest it can be,” Reece said.

His fitness made the surgery easier and also improved Matt’s recovery, Reece said.

“He has no limitations. The mechanical valve should last for the rest of his life,” Reece said.

While he’s impressed with Matt’s recovery, Reece expected nothing less.

“He’s very motivated and determined. He’s figured out ways to achieve his goals,” Reece said.

Had the pandemic not interfered, Reece said it would have been totally reasonable for Matt to run a marathon later this year.

“It’s about a person’s mindset more than anything else,” he said.

Running marathons around the world

Following that first Las Vegas half-marathon back in 2012, Matt did similar races in Tucson, Moab and Albuquerque and started nursing school in the spring of 2013.

By 2016, he had graduated to full marathons.

Matt Johnston, who was born with a heat defect, shows off a scar from heart valve surgery.
Because running kept Matt Johnston so healthy, he recovered very well after surgery. Here, he shows his scar. Photo by Cyrus McCrimmon for UCHealth.

He did his first at Disney World in January of 2016. Soon after, he ran the Chicago Marathon, then in November 2017, ran one of his favorites so far: the New York City Marathon.

“It was amazing. You start at Staten Island and run through all five boroughs. You draw inspiration from the other runners, but also from the crowds. It’s a city that absolutely embraces the race,” Matt said.

That year, one of Matt’s running heroes, Shalene Flanagan, became the first American woman to win the New York City Marathon.

The following September, Matt ran the Berlin Marathon, another all-time favorite since Eliud Kipchoge set a new world record time of 2:01:39.

running with a heart defect. Matt Johnston at one of his favorite races, the Berline Marathon
Matt Johnston, running at one of his favorite races, the Berlin Marathon. Photo courtesy of Matt Johnston.

“I’m super proud that I was running that race with him. I was warming up next to him and joked, ‘You’re running kind of slow today.’ He smirked and ran away.”

As Matt finished his race, the announcers congratulated all the runners: “You’re now running on a world-record course.”

Matt was especially thrilled because he ran that race to support Smile Train. The group raises money to provide surgeries for children with cleft lips and palates.

By May of 2019, Khanna suggested he schedule his surgery soon.

Matt squeezed in one last pre-surgery race and earned his best time ever: 1:27 at the Missoula Half Marathon.

Matt went into the surgery feeling nervous, but hopeful.

“Everything went flawlessly,” Matt said.

As he woke up, he looked at the clock and saw that it was only 1 p.m. That was hours earlier than expected. He knew the surgery must have gone well.

“I was shocked and so happy.”

Matt Johnston was born with a heart defect and took up running to postpone surgery as long as possible. Here he poses in a shirt from one if his favorite races: the New York City Marathon.
Matt Johnston poses in a shirt from one of his favorite races: the New York City Marathon. He looks forward to the day when he can travel and do marathons around the world again. In the meantime, running in Colorado’s beautiful mountains keeps Matt healthy and happy. Photo by Cyrus McCrimmon for UCHealth.

The recovery was not easy.

“It was a struggle even to stand up at first,” Matt said. “The next day, they had me walk. I made it five feet and was out of breath, then eight or 10 feet. It was just a progression. I’d do a little more and a little more.”

About five weeks after surgery, Matt tried jogging a short distance.

“I could only go for 30 or 45 seconds,” he said. “But, that was probably the best moment of my recovery.”

These days, Matt is running six to eight miles on mountainous trails with a lot of elevation gain. He does all of this while wearing a mask because he wants to respect others who also might have underlying health conditions and could be more vulnerable to getting severely ill from COVID-19.

“I wish people would wear a mask any time they are not able to socially distance,” Matt said. “I’m doing the best I can to focus on being healthy and respecting others.”

While the trails are more crowded than ever, Matt has discovered that he loves running on trails.

“I’m having the best time of my recovery,” Matt said. “All of the work I’ve put in since my recovery has really started to show.”

The Dublin Marathon has been postponed until 2021. Assuming the pandemic is under control, Matt plans to be there.

“Whether it’s your first race or your millionth, you always meet random people who inspire you.

“You tell each other: ‘Congrats. Let’s go knock this out.’

“I love that sense of community.”

About the author

Katie Kerwin McCrimmon is a proud Coloradan. She attended Colorado College thanks to a merit scholarship from the Boettcher Foundation and worked as a park ranger in Rocky Mountain National Park during summers in college.

Katie is a dedicated storyteller who loves getting to know UCHealth patients and providers and sharing their inspiring stories.

Katie spent years working as an award-winning journalist at the Rocky Mountain News and at an online health policy news site before joining UCHealth in 2017.

Katie and her husband, Cyrus — a Pulitzer Prize-winning photographer — have three adult children and love spending time in the Colorado mountains and traveling around the world.