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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.