Sofia Hart is bravely sharing her heart condition with the world.
The TikToker gave followers a look into how she lives while attached to a life-saving medical device called an LVAD—a left ventricular assist device—which keeps her heart pumping.
"Hello, I'm Sofia," the 30-year-old said in a July TikTok video. "I run off batteries, literally, and I don't have a pulse. I'm a human without a pulse, it's true. I'm not making it up."
Sofia added, "I am on a device—I guess you can just call it a life support device called an LVAD and it's called a left ventricular assistive device and it pumps to the left side of my heart."
Although the Massachusetts native noted that viewers wouldn't be able to see her scar, she did reflect on where it came from.
"I had open heart surgery at the end of November to implant the device that's inside of me that basically hugs my heart," Sofia continued before holding up the remote and batteries that are used to control the device. "It's on a continuous flow."
Explaining how she ended up needing open heart surgery, the social media star explained, "I have end-stage heart failure and I'm due for a heart transplant and I'm going to start sharing my story."
Over the past three months, Sofia has continued to document her daily life on TikTok and recently spoke to People about navigating her journey.
"That cord is pretty long, and I have mastered living in places where I can get around on that cord," she told the outlet in an interview published Oct. 24. "There's no turning back for me."
Reflecting back on when she realized something was wrong, Sofia recounted, "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."
@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
And even though Sofia's twin sister Olivia was diagnosed with the same rare genetic mutation, she initially thought she was suffering from Lyme Disease. Olivia, who was working at the hospital Sofia was at, delivered the hard news.
"My sister said, ‘You don't have Lyme disease,'" she continued, "'and we really wish you did.'"
These days, Sofia is looking ahead to her heart transplant.
"I'm doing the work-up for it," she said 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."