A woman with a rare genetic heart condition doesn't have a pulse, she says. Instead, 30-year-old Sofia Hart depends on an LVAD — a left ventricular assist device — to keep her heart beating. The Boston woman shared that her device, which is just a temporary solution for most people, is a “bridge to a transplant," that is keeping her alive until she receives a new heart. “There's no turning back for me," she said. She has taken to TikTok to document her life living with an LVAD daily.
In 2022, she discovered that she has irreversible dilated cardiomyopathy, a condition that her twin sister was born with. But for Sofia, it wasn't until she became ill that doctors found out she also had the condition. So she took the same treatment route at 29 years old that her sister took at 22: live on an LVAD until she could get a transplant.
"I'm doing the work-up for it," she explained. "I feel guilty having the option of choice to be finding my footing before jumping into transplant. I came out of the gates hot and then realized, well, the device is doing well, I’m doing well on the device, transplant is such a huge, huge, huge deal that I wanted to learn more about life, transplant, live with 'Janis' — the name I gave my LVAD — accept all that’s changed and now I’m ready to go to transplant."
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“I run off batteries,” she showed in one TikTok, which has gained over 1.5 million views. She went on to share that she has to carry a spare set of batteries with her when she leaves the house. Each battery is set to last for 18 hours, and when one runs out, she has 15 minutes to change to a new one.
"You seem so young to be dealing with heart failure," one user commented. "Praying you get a transplant soon!!"
