Victim of a genetic disease, American Sofia Hart, 30, has had her heart stopped for a year. Since October 2022, the young woman has been kept alive by an artificial organ waiting for a compatible donor for transplant.
Sofia has dilated cardiomyopathy: the condition increases the size of the ventricles, generating intense heart failure. The condition itself is not uncommon, and occurs in one in every 500 people, often as a result of illness or medication use.
In Sofia’s case, however, cardiomyopathy is genetic and irreversible — therefore, transplantation is the only possible treatment.
The young woman discovered that she had the disease at the beginning of 2022, when she began to feel a lot of pain and fatigue without explanation. “I felt tired that I really can’t describe,” she says, in videos posted on her TikTok account.
Heart in the socket
While waiting for a compatible donor, Sofia lives with a left ventricular assist device (LVAD) that keeps her pulse active. The young woman is no longer hospitalized and, at home, is always plugged in to ensure the artificial heart works.
“I use a very large charger and can move around the house without having to unplug it. This way, I can guarantee that I will always have a battery”, explains Sofia. She nicknamed her LVAD Janis Joplin after the rocker’s 1970s hit Piece of my Heart.
She says she is very grateful to Janis. “It was what allowed me to get out of the hospital bed. In another scenario, it would be there until now,” she says.
Her twin sister, Olivia, has the same disease and had a heart transplant in 2016, but didn’t have to wait as long using the LVAD.
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