Sofia Hart, a 30-year-old American woman, goes about her daily routine just like anybody else. However, due to a condition called dilated cardiomyopathy, a type of heart muscle disease, she depends on a life-saving medical device - Left Ventricular Assist Device (LVAD). Speaking with the US weekly magazine PEOPLE, the Boston resident said, "That cord is pretty long, and I have mastered living in places where I can get around on that cord."
Explaining the role of the LVAD in her life, she shared that for most people an LVAD is a temporary solution. However, for her, it is a “bridge to a transplant," keeping her alive until then. Hart discovered her condition in the summer of 2022 while working at a horse farm.
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What Is Dilated Cardiomyopathy?
Dilated cardiomyopathy is a heart muscle condition that occurs when the heart's main pumping chamber, which is the left ventricle, starts to expand. This causes the heart muscle tissues to dilate, stretch, and become thinner, explains the American Heart Association (AHA), resulting in inefficient pumping of blood and possible heart failure in severe cases. As per the US health body, it is prevalent in adults younger than 50 and up to one-third of the people who have it inherit it from their parents.
Understanding The Symptoms
In Hart’s case, fatigue and aches were some of the common symptoms she experienced. She told 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.”
According to the Mayo Clinic, the condition can be asymptomatic in the early stages. However, common signs include:
- Shortness of breath during activity or while lying down
- Reduced ability to exercise
- Swelling in the legs, ankles, feet or abdomen
- Chest pain or discomfort
- Pounding heartbeat, also known as palpitations
A Rare Genetic Mutation
In the US, dilated cardiomyopathy is said to affect 5-8 people per 1 lakh cases, leading to approximately 10,000 deaths and 46,000 hospitalisations each year. It is also one of the most common reasons for a heart transplantation.
Sofia was one among the rare cases of cardiomyopathy.
Hart further mentioned her twin sister Olivia was also born with the same rare genetic mutation and had suffered heart failure seven years, subjecting her to an LVAD machine until she had a heart transplant in 2016. However, no one could tell Hart had it too until she got sick. Hart even believed that she had lyme disease because she worked out outdoors and could have been bitten by a tick. But that was not the case.
Both the sisters now live with the Troponin (TNN) variant, which is associated with the development of cardiomyopathy.
Sofia received the same course of treatment at age 29 that her sister received at 22 and lives with an LVAD until she gets a transplant.
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Role Of Left Ventricular Assist Device (LVAD)
The British Heart Foundation describes an LVAD as a kind of artificial heart pump, which helps the failing heart to restore normal blood flow.
Speaking about her experience living with on an LVAD, she said, "“[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,” she added.
Hart had recently taken to TikTok to document her journey, sharing how she has “no pulse," and "runs off batteries." The video she posted garnered a whopping 1.5 million views.