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Woman with rare heart condition lives with no pulse, uses 'batteries' instead

By Nicole Olalia Published Oct 25, 2023 3:10 pm

A woman on social media revealed that she has no pulse and that she runs on "batteries."

TikTok user Sofia Hart, 30, shared how she lives her life dependent on LVAD after losing her pulse due to a rare genetic mutation. 

“I run off batteries, literally, and I don't have a pulse," she shared in one of her TikTok videos that has garnered over 1.5 million views. 

A Left Ventricular Assist Device (LAVD) is a life-saving medical device that helps Sofia’s heart continue pumping despite losing her pulse. This is usually a temporary solution for people who have reached the last stage of heart failure. For Sofia, this serves as her “bridge” until she gets her heart transplant. 

Sofia discovered that she had irreversible dilated cardiomyopathy while working at a horse farm last summer. She recalled her symptoms that she initially thought to be Lyme disease. 

“I started getting really achy and so fatigued,” she shared in an exclusive interview with PEOPLE.  

“It's like [a] fatigue that you can't really describe. I wasn't tired in my brain, but my body was so tired,” she added. 

@aheartforsofiahart Heart Mate 3 #LVAD youre a literal life saver! Starting to share my heart failure journey. I have no idea where to start or how this app works but here goes nothin! @herschelsupply i bought this fanny pack at a local skate shop and i couldnt live day to day with out it so shout out to unknowingly supporting a medical patient! I highly recommend this pack to other LVAD patients who are on the go or want to be hands / shoulders free. #LVAD #heartmate3 #lifesupport #foryou #fyp #heartfailure #aheaetforsofiahart #heartfailurejourney #cardiomyopathy #learningeveryday #growth #healing #gratitude #happytobehere #roadtotransplant ♬ original sound - AHeartForSofiaHart

It was her sister Olivia, who worked in the hospital where she got tested, who delivered the news about her heart condition to her.  

“My sister said, ‘You don't have Lyme disease—and we really wish you did,” she recalled. 

Her sister had also suffered heart disease seven years prior, but genetics weren’t among the factors considered until both of them were confirmed to suffer heart failure at a young age. Similarly, Olivia also had to get an LVAD device until her transplant in 2016. 

Now, Sofia has to do the same and live with the device until she gets a transplant. 

“[The LVAD] didn't scare me as much because I saw how well my sister lived her life with her LVAD,” she tells PEOPLE. Instead, she said that she was excited to get the device when she underwent open-heart surgery to implant it in November. 

Nearly a year after living with the LVAD, she claimed that the device completely shifted her life and her mindset. Right now, Sofia eagerly looks forward to getting her transplant. 

"I'm doing the work-up for it," she shared to PEOPLE. "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."