The cause of a woman’s chronic fatigue eluded her doctors until they discovered an “incredibly rare” heart condition was behind it — leaving her with a 20% chance of long-term survival.
Charlotte Carney, from Northwich, Cheshire, in the United Kingdom, assumed her sleepiness and brain fog were typical “lazy” teenage behavior, the Sun reported. But after years of difficulty keeping up with her peers, Carney’s doctors finally found the cause: restrictive cardiomyopathy. The condition means that the heart muscle has hardened to the extent that blood cannot fill its chambers and circulate properly throughout the body. As the muscle stiffens over time, heart failure looms.
In the early days of her illness, Carney assumed it was stress or hormones keeping her down. It wasn’t until 2015 when she moved to Liverpool to study forensic psychology and criminal justice at John Moores University that she realized her regular naps were abnormal.
The student could hardly walk from one class to another without struggling, according to the Sun.
“My heart was beating mega fast, and I would be exhausted and out of breath from a five-minute walk,” Carney said. Despite her attempts to stay active with ballet and regular exercise, she “couldn’t even walk up [a] hill” without shortness of breath and chest pain.
“At that point, some days I’d be fine, some I wouldn’t be. So, on the good days, I’d forget about it,” she added. Meanwhile, her family doctor dismissed her symptoms as “stress.”
It was her mom who convinced her to have a more in-depth screening, so she sought care with the charity group Cardiac Risk in the Young, which referred her to a cardiologist. “They were really vague and chilled,” she said of the medical assessment.
By October 2016, she had undergone CT scans, X-rays, MRIs, more than 100 blood tests and an echocardiogram, all of which culminated with a diagnosis of restrictive cardiomyopathy.
Carney described how finally knowing has changed her life, for better or worse. “At the time, I was in my own little world, I was just focused on my exams. I just tried to get on with it in a logical manner and pretend it wasn’t really happening,” she said.
“The first time it really hit me that it was bad was when the doctor rang me while I was in uni and told me I had a clot and needed to buy blood thinners,” Carney recalled.
Her condition had made it difficult to make friends in a new setting, Carney admitted, but soon after she got her diagnosis, she decided to move back home to Cheshire.
The fact that there is no cure for restrictive cardiomyopathy “was all a bit hard to navigate at 20,” said Carney.
In August 2017, Carney began seeing doctors at Wythenshawe Hospital, one of five heart transplant hospitals in the UK, who said she would need a new organ to save her life.
Carney was matched with a donor and underwent a heart transplant on Feb. 28, 2018 — and awoke seven days later from a medically induced coma.
She went back to college in September 2018 to finish her degree.
“I could breathe again,” Carney said. Within months of her operation, her brain fog had also lifted, and she was still tired, but it was a different sort: “I knew I was exhausted from what happened, not just from existing.”
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