'I Run On Batteries': US Woman With Rare Genetic Heart Condition Says She Has No Pulse

'I Run On Batteries': US Woman With Rare Genetic Heart Condition Says She Has No Pulse

Sofia Hart, a 30-year-old from Massachusetts, has an unusual genetic heart condition that leaves her without a heartbeat. She refers to herself as “running on batteries.” 

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What is irreversible dilated cardiomyopathy?

She’s been diagnosed with irreversible dilated cardiomyopathy, which affects one of the heart’s ventricles and could eventually lead to heart failure.

Sofia relies on a life-saving device called the LVAD to keep her heart pumping while she waits for a heart transplant.

How does LVAD help Sofia?

The LVAD assists the left side of her heart pump blood throughout her body. She learned about her condition in the summer of 2022 while working at a horse farm, as reported by The People magazine.

@aheartforsofiahart November 14th 2022 my life changed forever. This is the video leaving my local hospital and hometown on #marthasvineyard being picked up by #bostonmedflight and brought to #massgeneralhospital. A day i will never forget. A day that leaves me with so much gratitude. From start to finish. I was in the best hands. From hospital staff, to the friends and family that dropped everything to send me off comftorably. To my sister who was also my medic. To the flight medics, to Victoria who traveled with me, to the most quiet peaceful soul shifting flight of my life. I think about this moment a lot. Where it all truly started. I thought i had Lyme, and i left on a med flight. Thanks for your patients as i navigate this medical and healing journey learning how to share my story for myself and most importantly i aim to help others. #aheartforsofiahart #bostonmedflight #massgeneralhospital #marthasvineyard #community #emergencyresponders #ems #medflight #heartfailurejourney #mindovermatter #secondchances #slowlybutsurley #healingera #medicaljourney #blessed ♬ original sound – AHeartForSofiaHart

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She said to People, ‘I started getting really achy and so fatigued. It’s like a fatigue that you can’t really describe. I wasn’t tired in my brain, but my body was so tired.’

Although Hart’s twin sister Olivia was born with the same rare genetic mutation, they couldn’t discover it until Sofia also became sick.

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Olivia had heart problems seven years before Sofia, but they didn’t think it was related to genetics until they both experienced heart failure at a young age. 

Olivia also needed an LVAD device before her heart transplant in 2016. Like her sister, Sofia has to use the same device until she can undergo a heart transplant.

“I’m doing the work-up for it,” she informs People. “I feel guilty having the option of finding my footing before jumping into a 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.”

Hart received the same treatment at 29 as her sister did at 22, living with an LVAD until getting a transplant. Hart plugs into a wall outlet at her Boston home to power the device.

She told PEOPLE, “That cord is pretty long, and I have mastered living in places where I can get around on that cord.”

Hart chronicled her life on TikTok, and her account gained popularity, attracting millions of views. She described how she lacks a pulse and relies on batteries. One of her videos received 1.5 million views.

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As she shows on TikTok, when Sofia plans to step out, she connects her LVAD to power sources and keeps an extra battery set with her.

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Source: englishtalent.edu.vn

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