Credits: Social Media
Woman ‘without a pulse’ who ‘runs off batteries’ documents life with end-stage heart failure
A woman who doesn’t have a pulse has accumulated thousands of followers on TikTok documenting her life living with end-stage heart failure.
Sofia Hart, 31, says she “runs off batteries” as she has a Left Ventricular Assist Device (LVAD), a life-saving medical device that keeps her heart pumping.
Woman ‘without a pulse’ documents life
In a recent video, Sofia, who grew up in Martha’s Vineyard and now lives in Boston, explained that she hasn’t had a pulse for 668 days, almost two whole years.
While standing on the beach, she put two fingers on her neck and said: “I don’t have one [a pulse]. If you could feel it, you wouldn’t feel it.”
She has irreversible dilated cardiomyopathy, which is when the heart chambers become enlarged and cannot pump blood effectively, the American Heart Association explains.
Sofia only discovered that she had the heart condition in the summer of 2022 when she became really tired and achy while working on a horse farm.
Her twin sister Olivia has the same condition and had a heart transplant in 2016, but they didn’t realise it was caused by a genetic mutation until Sofia became unwell.
In many of her videos, the 31-year-old shows her LVAD, an electronic device which she has to wear in a fanny pack around her stomach.
“I run off these two batteries and this controller that connects to this driveline that connects to a motor slash pump,” she said.
The heart pump was surgically inserted and helps the main pumping chamber of called the left ventricle pump blood to the rest of the body.
When she goes out, it’s powered by two 14-volt lithium batteries. At home, she connects the LVAD to a plug socket.
She is waiting for a heart transplant
Sofia has the LVAD, which she named Janis after her favorite star Janis Joplin’s song Piece of My Heart, while she waits for a heart transplant.
Her heart was only working at 15% capacity, so the device gives her security that she isn’t going to drop dead, she told People.
Patients are often given the heart pump as a bridge to transplant, to keep them alive while they are waiting for a sufficient heart to become available.
Transplant waiting lists are extremely long as there are more people who need hearts than donors. The heart comes from someone who has recently died.
While she waits, Sofia lives her life to the fullest with her LVAD, going out, staying active, remaining positive and even going for runs.
“Having something like this [an LVAD] is not made for someone’s life to end. It’s actually made to improve their life,” she said in a video.
She has hard days, but staying “positive, grounded and mindful” gets her through each day, and she hopes that her TikTok videos will help others.
