Rare gene mutations are an unfavorable fate that a handful of the human populace counters, rendering their lives dissimilar to the majority populace.
In an exclusive interview with People, Tik Toker, Sofia Hart, 30, explained about her unique journey with irreversible dilated cardiomyopathy that renders her to ‘live off of batteries’ attached to a device called LVAD (Left Ventricular Assist Device) that keeps her heart pumping.
Sofia, 30, tells People, “That cord is pretty long, and I have mastered living in places where I can get around on that cord,” in reference to the structure of the LVAD machine and how she manages daily life around it. Commenting on the symptoms of the disease that started to show up, Hart tells People, “I started getting really achy and so fatigued,” adding, “It’s like a fatigue that you can’t really describe. I wasn’t tired in my brain, but my body was so tired.”
Sofia grew up in Martha’s Vineyard but is now located in Boston, reiterating to People that LVAD surgery was a temporary fix for other individuals with the same condition. However, for Hart, it is a buffer stepping stone till she gets her heart transplant. People then reveal a shocking detail of the 30-year-old woman’s life, elucidating that her twin sister Olivia was also born with the same mutation. Still, it was not discovered until Sofia got sick.
“I was out of breath even from driving,” Hart tells People in the same interview and further commented that everyone around her assumed that she had Lyme disease, which provided a satisfactory conclusion to her unbridling fatigue. However, Olivia, who worked at the hospital where Sofia got a test done for Lyme, reportedly told her sister, “You don’t have Lyme disease — and we really wish you did.” People reported that Sofia and Olivia have the TNN variant, which the National Institute of Health says has “younger ages of diagnosis and poorer clinical outcomes.”
Sofia shares her thoughts with People on her life-threatening condition, “I’m doing the work-up for it,” adding, “I feel guilty having the option of choice to find 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.”
Sofia tells People that she will be getting an echocardiogram next month, to which she said, “I’m ready to dive into the transplant process,” adding, “[The LVAD] didn’t scare me as much because I saw how well my sister lived her life with her LVAD,” further adding, “I was really excited [to get it]. Going into the OR, I was glowing. I was relieved because I was so scared of dropping dead knowing my heart was only working at 15%. The LVAD brought a lot of security to me, right off the bat.”
In retrospect, her growing TikTok follower base where she documents her journey, she said, “If I knew then what I know now, I would have stayed. I would have put my feet up, like, ‘Keep me here as long as you want,’ because life is very tough outside of the hospital as a medical patient.” “I run off batteries,” she explained in one video with 1.5 million views.
Commenting on the batteries that keep her heart pumping since she has no pulse, she remembers a close call where her alarm went off on the LVAD, signaling that the battery charge had run out and needed more of it. She was deep in sleep. “Nothing, nothing prepares you,” she told People, adding, “None of the training they do with you, nothing prepares you for when it actually happens because I was frozen solid when I woke up. I almost forgot what to do. Then I instantly just, autopilot, grabbed my two batteries, unplugged them from the wall, plugged them into my batteries, and then the alarm turned off. I went down to the basement, flipped the breaker and everything was fine.”
As Hart nears her one-year anniversary after LVAD surgery, she reiterates to People how incredible it is, saying it “completely shifted my life and my mindset and just in every direction I want to take.” Hart has recently shown enthusiasm to join the American Heart Association by sharing her journey and story, hoping it will be a coping mechanism for a similar patient.