Kayla’s back on her feet after Cardiac Fitness Program

Kayla, who has Marfan syndrome, hangs out at the beach.
PHOTO COURTESY OF MADDY GRAVES PHOTOGRAPHY

Like many teenagers, 17-year-old Kayla Nelson attends high school and has a part-time job — hers is at a local bagel shop. But for Kayla, these “normal” teenage responsibilities were nearly impossible just a couple of years ago.

Kayla was born with Marfan syndrome, which affects the flexibility of her joints and can cause a number of other health issues, including problems with the heart. Kayla had a large tumor removed and ended up in the hospital for 12 days in her sophomore year. She found that everyday tasks became a challenge.

Walking was hard work

“I didn’t have any energy and wasn’t able to walk around too much, so I was out of school for two or three months,” she says. “When I did get back to classes, just walking to the other side of the school was really hard work for me, so my schedule was very limited.”

That’s when her cardiologist Dr. Ronald Lacro, director of the Cardiovascular Genetics Clinic at Boston Children’s Hospital, recommended she enroll in the Cardiac Fitness Program at Boston Children’s.

“He thought it would help me get back on my feet and back on schedule,” Kayla says.

She started the program last August, right before her junior year.

“For my first few visits, they set me up on all the heart monitor equipment,” she says. “Then, I’d get on the treadmill and they’d see how long I could walk keeping my heart rate up without pushing it too much.”

Seeing progress, increasing motivation

Although Kayla found exercising really hard at first, she gradually started to see progress. At first, she went to the cardiac fitness lab twice a week, doing a circuit that included planks, jumping jacks, sit ups and wall sitting with the yoga ball.

“They kept track of my progress with benchmark tests, so I saw a gradual improvement over time,” she says. “When they would tell me what I’d accomplished, like I could hold a plank 10 seconds longer than a month ago, that helped motivate me.”

Kayla, who has Marfan syndrome, gets a visit from a dog while in the hospital, gets pushed by Red Sox mascot Wally, and poses with her favorite nurses.
Kayla spends time with a Pawprints dog and Wally while in the hospital, and catches up with some of her favorite nurses during an outpatient visit. (PHOTOS COURTESY OF NELSON FAMILY)

Once she had built up some strength and endurance, she cut back to once a week in the fitness lab, but added a day of working out at home. The team also encouraged her to sign up for a membership at her local gym.

“The Cardiac Fitness Program has really helped me,” she says. “At the start of the last school year, it was still kind of hard getting around, but as the year went on, I definitely noticed an improvement. I was able to be in school all year without having to take off any major gaps of time.”

Back to being a ‘normal’ teenager

Her mom Kirsten also noticed a big change. “I remember going with her the first day and thinking, ‘Oh my gosh, this is going to be so hard for her.’ But by the end, she could do everything they were asking her to do without any problems.”

Kirsten also appreciates how the program has changed Kayla’s everyday life. “Before the program, she was doing a lot of lying around because she didn’t even have the energy to get up. Now, she’s like a normal teenager. It’s great to have her back.”

Kayla started her job at the bagel shop shortly after enrolling in the Cardiac Fitness Program, and by the summer, felt strong enough to take on nine-hour shifts. She was also able to enjoy spending time at her grandparents’ lake house, kayaking and swimming, activities she wasn’t able to do before without feeling tired and sore.

Ready to take on the future

Now starting her senior year, Kayla feels ready to take on anything that comes her way, including college, thanks in part to the strength she’s gained from the Cardiac Fitness Program. Her experience dealing with her various medical conditions has also inspired her as she looks toward her future.

Kayla, who has Marfan syndrome, is back to her regular activities after completing the Cardiac Fitness Program.
PHOTO COURTESY OF MADDY GRAVES PHOTOGRAPHY

“From all my experience in the hospital I really want to go into pediatric nursing,” she says. “I love all of my nurses and still keep in touch with them.”

Learn more about the Cardiac Fitness Program.