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Doctors blamed anxiety for her health issues. She actually had a rare heart condition

For years, Kelsey Gumm thought she experienced exhaustion and anxiety, causing her to faint. It turned out she had a rare, deadly heart condition.
/ Source: TODAY

The first time Kelsey Gumm fainted was during U.S. Navy boot camp. The then 17-year-old woke up to doctors peppering her with questions about how much water she drank and how much she slept. Eventually, they decided she was exhausted and recommended rest.

Over her decade-long military career, she’d sometimes collapse and doctors said exhaustion or anxiety was to blame. She had no idea a rare heart condition, left ventricular non-compaction cardiomyopathy, was actually the cause of her swooning — and the heart problem could be deadly.

Heart disease was never on my radar. Cancer was on my radar. But I had never heard of this,” Gumm, 33, of Mount Pleasant, Wisconsin, told TODAY. “I would not have risked almost dying so many times had they found it in the beginning.”

When Kelsey Gumm fainted during her military career, doctors told her it was stress, anxiety and exhaustion. She had no idea she had a rare heart condition that could be fatal. Courtesy Kelsey Gumm

She’s sharing her story so others understand heart disease can impact people at any age.

Doctors told her to 'relax'

In 2004, Gumm enlisted in the military right after high school. She was healthy when she entered, but the rigors of basic training really boosted her athleticism.

“I was in the best shape of my life,” she said. “Working out once or twice a day.”

That’s why the first time she collapsed felt like such a shock. She never imagined that as a teenager in amazing physical shape, she’d have any problems.

Dehydration and exhaustion seemed like a logical thing,” Gumm explained.

During basic training for the U.S. Navy, Kelsey Gumm was in the "best shape of her life." She didn't understand why she kept fainting as she exercised or trained. Courtesy Kelsey Gumm

A few months later, though, she passed out when she was training in Florida. When she woke up, doctors arrived at another cause: heartburn and anxiety.

“I would describe that it would feel funny in my chest,” she said. “They told me just to relax.”

Gumm simply believed the doctors.

“I would tell them, ‘Sometimes it feels like there's an elephant sitting on my chest’ or ‘Sometimes my heart feels like it's skipping, like it's not beating how it's supposed to,’" she said. "They would just tell me, 'You're too young for heart disease.'”

This familiar pattern repeated itself over the years: Gumm’s vision darkened, she’d collapse and wake up in an ambulance or hospital. Each time a doctor assured her that it was stress, anxiety, exhaustion or dehydration, and recommend she relax, get more sleep or drink more water. One doctor even suggested she was consuming too much caffeine.

“The doctor basically said I was faking it and they sent me on my way,” she said.

While it was frustrating to be dismissed, Gumm never imagined something was seriously wrong. She was young, healthy and did not have a family history of heart disease.

In 2014, she was working out when she collapsed again. This time her skin turned gray and she couldn’t feel her arms or legs. When she told the nurse at the emergency room about the new symptoms, she suggested a cardiology consult, “just to be safe.”

After undergoing an ultrasound, the doctor finally told Gumm what was wrong — and it changed her life.

“He says, ‘I don't know how to tell you this but your career in the Navy is over,' and I was shocked,” she recalled. “He says, ‘You have left ventricular non-compaction cardiomyopathy and every time that your heart was overworked, the spongy pieces of your heart sent your heart into a fatal rhythm.'”

In the military, Kelsey Gumm was a damage controlman, aka a firefighter. Once during a training she fainted, but doctors suspected it was just stress and anxiety. Courtesy Kelsey Gumm

Gumm couldn’t believe it.

“I almost died and you are telling me this has been happening for so many years and you are just now seeing it,” she said. “That is a lot to take in.”

Left ventricular non-compaction cardiomyopathy is a rare disorder where the lower left heart chamber develops incorrectly so it is “spongy.” This makes it nearly impossible to pump blood correctly. While the National Institutes of Health states that many people do not have symptoms, other signs include:

  • Blood clots
  • Arrhythmia, aka irregular heart beats
  • Fluttering or pounding chest palpitations
  • Exhaustion during exercise
  • Shortness of breath
  • Fainting
  • Swollen legs
  • Inability to lie down

Living with a chronic heart condition

By the end of 2014, Gumm medically retired from the military. She works for an organization in Wisconsin where she helps veterans in crisis access care. She takes medications for her heart and has to listen to her body when she exercises. During a recent ski trip to Colorado, she had to take a two-hour break to re-energize.

“I'm in such a better place that I now know how to manage my heart disease,” she said.

Gumm wants others to learn from her experience and she volunteers with the American Heart Association.

“I just want people to advocate for their own health and to not be afraid to question what your doctors are saying because it's your body and you know your body best,” Gumm said.

Over the past six years, Kelsey Gumm has learned how to manage her heart disease with medication and lifestyle changes. She can exercise, but not as hard as she once did. Listening to her body helps her enjoy activities without stressing her heart. Courtesy Kelsey Gumm

She also hopes the military starts considering heart health in physical requirements. She never remembers doctors examining her heart — even after she shared her symptoms.

“There needs to be better heart testing for members in the military,” she said.