Mass. Woman, 30, with Rare Genetic Heart Condition Says She Has No Pulse: 'I Run on Batteries' (Exclusive)

TikToker Sofia Hart documents life with an LVAD — a device that keeps her heart pumping — while she awaits a heart transplant

When Sofia Hart wakes up in the morning, she brushes her teeth and makes breakfast like most people do.

However, unlike most people, she’s connected to a wall outlet that keeps her alive.

“That cord is pretty long, and I have mastered living in places where I can get around on that cord,” Sofia, 30, tells PEOPLE exclusively.

The life-saving medical device is an LVAD — a Left Ventricular Assist Device — which keeps her heart pumping.

Sofia, who grew up in Martha's Vineyard and now lives in Boston, explains that an LVAD — which is powered by batteries when she leaves the house — is a temporary solution for most people. But hers is a “bridge to a transplant," keeping her alive until then. “There's no turning back for me.”

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Sofia has irreversible dilated cardiomyopathy, which she discovered last summer she when she was working at a horse farm.

“I started getting really achy and so fatigued,” she tells 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.”

Although Hart's twin sister Olivia was born with the same rare genetic mutation, It wasn't discovered until Sofia also became ill.

In fact, she initially thought she had Lyme disease, since she worked outside and could have easily been bitten by a tick that carried the bacteria. She went to a walk-in clinic to take a Lyme test.

“I was out of breath even from driving,” she tells PEOPLE.

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When she was at the hospital awaiting her results, Olivia, who was working at the hospital at the time, delivered the news.

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

Seven years earlier, Olivia had suffered heart failure and had to get an LVAD device until her transplant in 2016. But as Sofia explains to PEOPLE, genetics weren’t considered a potential cause until both of them had suffered heart failure as young women.

Now they know they both have the TNN variant, which the National Institute of Health says has “younger ages of diagnosis and poorer clinical outcomes.”

Sofia was given the same course of treatment at age 29 that her sister was given at 22: Live with an LVAD until she could get a transplant.

"I'm doing the work-up for it," she tells 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."

After next month's echocardiogram, Sofia tells PEOPLE, “I’m ready to dive into the transplant process.”

“[The LVAD] didn't scare me as much because I saw how well my sister lived her life with her LVAD,” Sofia tells PEOPLE of her device, cheekily nicknamed after her favorite singer Janis Joplin's hit "Piece of My Heart."

“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.”

As she recently shared on TikTok, she and her sister Olivia were cracking jokes — even quoting Elf — as Sofia boarded a helicopter from her local hospital on Martha's Vineyard for Mass General, where she received her LVAD.

But, as Sofia tells PEOPLE, “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.”

It’s why she started documenting her life on TikTok — and her account quickly took off, garnering millions of views as she explains that she has “no pulse.”

“I run off batteries,” she explained in one video with 1.5 million views.

As she shows on TikTok, when Sofia wants to leave the house, she plugs her LVAD into batteries, and carries a spare set of batteries around with her as well.

“They’re pretty heavy,” says Sofia. ”I have to bring my entire battery set in case. I was commuting back to Martha's Vineyard for work this summer and like, I'm carrying like 80 lbs. in a suitcase of just medical equipment.”

These days, she rarely forgets her spare batteries. “It's like a pat down,” she explains to PEOPLE. “Phone, keys, wallet, batteries, extra equipment, extra controller. My checklist just keeps going.”

Still, there have been some scary close calls.

As Sofia explains, the device is equipped with an alarm that goes off when it’s no longer connected to a power source.

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And one night, “I was completely asleep and it went off.”

“Nothing, nothing prepares you,” she tells PEOPLE. “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 from the wall, plugged into my batteries and then the alarm turned off. I went down to the basement, flipped the breaker and everything was fine.”

She’s also not allowed to go through metal detectors, as was the case when she joined Olivia and some friends at a Shania Twain concert.

“I had to get a body search but then everyone in my group did, which was super funny. I have, like, a bunch of bodyguards,” she tells PEOPLE.

As she approaches the one-year anniversary of her LVAD surgery, she says it “completely shifted my life and my mindset and just in every direction I want to take.”

Along with building the community she’s started on TikTok, Sofia wants to get more involved with the American Heart Association.

“I want to be involved so much more with the support groups in the community,” she tells PEOPLE, adding that on TikTok, “I can't tell you how many people have messaged me being like, ‘Your like positive attitude kept me alive.’”

“I've had really, really, really hard days with it,” Sofia shares. “But the thing that's kept me where I am is staying positive and grounded and mindful. And, if there's one thing I can do right now, it's make other people feel good.”

And while Sofia says “I've never really been too much of a self-celebrator,” she will commemorate her LVAD’s anniversary with a “simple day, explore Boston and go to museums and just do things that, I wouldn't have been able to do if I didn't have this LVAD.”

Although, she does have one idea on how to celebrate with style: “Dress up as grannies and go to brunch,” she tells PEOPLE, “because I basically have a old-lady heart.”

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