Medical Mystery: A Healthy Hiker Couldn’t Catch Her Breath

Irregular beats provide clues to rare condition   

After a day or two in the hospital, Ramsey’s health continued to deteriorate. “That first week is very fuzzy,” Ramsey says. “I rely on my children and my sisters to really fill me in on what happened.”  

Her heart started breaking into runs of fast and erratic rhythms that would sometimes resolve on their own and sometimes require IV medications to guide it back to a more regular beat. Each time it did this, Ramsey grew weaker.

It’s those runs, called ventricular tachycardia, that made Lam suspect Ramsey had an uncommon heart disorder called giant cell myocarditis. It affects only about 0.13 people out of 100,000 and is a difficult one to diagnose, experts say, since symptoms can vary and often overlap with other cardiovascular conditions.

Lam, who had seen giant cell myocarditis before, had a hunch he was seeing it again.

Sorting the needle from the haystack

A lot of people have heart failure, says Leslie Cooper Jr., M.D., a leading expert in giant cell myocarditis, who wasn’t involved in Ramsey’s case. In fact, about 960,000 new cases of heart failure are diagnosed every year, according to the Heart Failure Society of America.

However, when a patient with heart failure isn’t getting better with treatment and is having those irregular heart rhythms, the ventricular tachycardia, that’s a sign that it could be giant cell myocarditis. These telling symptoms help to “sort the needle from the haystack,” explains Cooper, who is chair of the Department of Cardiovascular Medicine at Mayo Clinic in Jacksonville, Florida.

In order to make a diagnosis, Lam needed to collect and examine a small amount of tissue from Ramsey’s heart muscle — and fast, since giant cell myocarditis progresses quickly and is fatal if left untreated. But Ramsey was too sick to handle a biopsy, so the doctors placed her on life support, hoping her condition would stabilize enough for them to conduct a procedure.

Ramsey did get stronger while hooked up to a machine, called ECMO, which essentially does the work of the heart, giving the muscle time to rest. And six days after she arrived at the hospital, the doctors got the biopsy and had a definitive diagnosis. Lam’s suspicion was correct: It was giant cell myocarditis, a rare condition in which inflammatory cells band together and attack the heart, destroying muscle along the way. Researchers still don’t know what causes it to occur in the first place.  

A medication-only treatment approach with immunosuppressive drugs, which can be an option for some people with giant cell myocarditis, was off the table for Ramsey due to the severity of her condition. “We knew that the path forward for her, given how sick she was, was a heart transplant,” Lam said.

On Aug. 20, 2022, 14 days after Ramsey went to the emergency room with shortness of breath, she received a new heart. She now considers that date her new birthday.

Don’t ignore ‘out of place symptoms’ 

Recovery was not easy. After surgery, it took three people just to help Ramsey stand up. And at rehab, she had to walk with a harness because she couldn’t put any weight on her legs — the same legs that were scaling glaciers just a few months before.

Ramsey, who had to retire after her illness, still doesn’t have the best balance, but is walking on her own now, even chasing around her grandkids. “I’m still pushing every day to try to get back to 100 percent, but not taking for granted where I am, that’s for sure,” she says.  

Her advice to others: Take care of your health, no matter how busy life gets. She says one thing that helped her get a new heart so quickly was being up to date on her mammograms and colonoscopies. (Doctors have to evaluate a patient’s overall health and their health habits — like whether they will take their medications after surgery — when determining if they’re a good candidate for a transplant.) And she credits eating right and exercising with helping her recover so well from the traumatic ordeal.

Beth Ramsey working at physical rehab.

Courtesy MedStar Washington Hospital Center

Finally, Ramsey stresses the importance of not brushing off concerning or persistent symptoms — advice that the experts echo.

“Be mindful of symptoms that may seem out of place from what they normally are,” Lam says. Feeling short of breath or like you might pass out could point to a heart issue, Cooper says. The same goes for tightness in the chest. “And seek care sooner rather than later,” Lam adds.

With ongoing therapy, Ramsey says she’s getting progressively stronger and is doing everything she can to “earn” her new heart. “Let me tell you, every day is a good day,” she says. “Even if it’s a bad day for the leg or if I didn’t sleep, I’m here. My family and I have a brand-new perspective on life.”