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| Mass. Woman, 30, with Rare Genetic Heart Condition Says She Has No Pulse: 'I Run on Batteries' (Exclusive) |
Sofia Hart's daily routine is as ordinary as anyone else's, from brushing her teeth to preparing breakfast. However, there's one remarkable difference – Sofia is tethered to a life-saving device that keeps her connected to a wall outlet.
This life-saving device is known as an LVAD, short for Left Ventricular Assist Device, and it's the reason Sofia, at 30, continues to thrive. She exclusively shared her story with PEOPLE.
An LVAD is typically a temporary solution for most individuals, but for Sofia, it serves as a "bridge to a transplant." She is living with irreversible dilated cardiomyopathy, a condition she discovered last summer while working at a horse farm. The initial symptoms included achiness and extreme fatigue, which she struggled to articulate. Her journey to diagnosis was a challenging one, as she initially suspected Lyme disease due to her outdoor work. It was only after visiting a walk-in clinic for a Lyme test that she received a different diagnosis.
Sofia's twin sister, Olivia, who shares the same rare genetic mutation, had previously experienced heart failure and relied on an LVAD before her transplant in 2016. It wasn't until both sisters faced heart failure that the genetic factor was considered. They were eventually diagnosed with the TNN variant, associated with younger ages of diagnosis and poorer clinical outcomes.
Following her diagnosis at the age of 29, Sofia embarked on the same path as her sister, living with an LVAD while preparing for a transplant. She reflects on her journey and her readiness to embrace the transplant process after her upcoming echocardiogram.
Sofia's LVAD device, affectionately named "Janis" after her favorite singer Janis Joplin's hit "Piece of My Heart," has become an integral part of her life. It brought her a sense of security as it improved her heart function significantly.
Despite the challenges of living with an LVAD, Sofia maintains a positive attitude, which she shares on TikTok, where she documents her life. She educates viewers about her unique situation, where she has "no pulse" and relies on batteries to keep her LVAD functioning when she leaves home.
While leaving her house, Sofia connects her LVAD to batteries and carries a spare set with her, despite their weight. She's become accustomed to this routine and remains vigilant to ensure she doesn't forget essential equipment.
The device comes with an alarm that alerts Sofia if it's disconnected from a power source. She recalls one night when the alarm went off while she was asleep, and the experience was nothing short of alarming. Her training kicked in, and she swiftly resolved the issue, emphasizing the unpredictability of living with an LVAD.
Due to her LVAD, Sofia can't pass through metal detectors, leading to amusing moments, such as receiving a body search while attending a Shania Twain concert with friends.
Approaching the one-year anniversary of her LVAD surgery, Sofia acknowledges the profound impact it has had on her life and mindset. She aims to be more involved with the American Heart Association and continue building her TikTok community, where her positivity has touched the lives of many.
Sofia's journey has had its share of challenges, but her unwavering optimism and mindfulness have helped her persevere. As she celebrates her LVAD's anniversary, she plans to explore Boston, visiting museums and partaking in activities that would have been impossible without her LVAD.
And, with a touch of humor, Sofia contemplates a unique celebration – dressing up as grannies and going to brunch, a fitting choice for someone with a heart that defies the odds.
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