Valve Disease Awareness Day is February 22 and Mended Hearts is a proud partner of this annual event! This year we are sharing a series of four unique stories about valve disease to highlight the fact that valve disease affects millions of people, in a variety of ways.
Jennifer is a licensed mental health counselor, Co-leads the Mended Little Hearts of Boston group, is the Northeast Regional Director for Mended Little Hearts, and is a member of the Mended Hearts/Mended Little Hearts Advocacy Committee.
Today, we hear from Jennifer who was born with Tetralogy of Fallot:
When I was born, it was very easy to detect that something was wrong as I was first very red, and then VERY blue. The doctors knew that I wasn’t getting oxygen and did several tests which revealed a congenital heart defect known as Tetralogy of Fallot. This is a four-part structural and functional defect, meaning, my heart didn’t work right or look right. One of the major defects was that my pulmonary valve was not working correctly, causing my pulmonary artery to be collapsed. These structures are vital for breathing and bringing oxygen to the lungs. After two cardiac catheterizations to open my artery temporarily, it was decided that at 6 months of age, I would need open heart surgery to repair the defects, including removing my disabled pulmonary valve.
Over my lifetime, it was important to my doctors that I know exactly what this all meant. I recall at each visit, my doctor drilling me about the 4 major components of TOF and feeling so proud when I got it right. I became voraciously interested in the human body, including my own, mainly its strengths and its limitations. Because of my missing valve, blood flow was irregular between my heart and my lungs. I was told I needed a lot of time to work up to heavy amounts of cardio exercise and that I should rest when I needed to. This allowed me to dance, do gymnastics, and cheer throughout my childhood and adolescents. Because I have always had a high need for achievement, I knew limiting myself was going to be a tricky thing for me to negotiate. I wanted to push myself at everything I did and sometimes I would turn very red during my activities. A lot of times, I’d “take a second” and then get back into it. Thankfully my coaches and instructors were all aware of my heart condition and provided me the time I needed to catch my breath and take a break before the rest of the team. I remember one time when I was at cheerleading camp in high school, it was in the middle of the summer, it was hot, muggy, and we were all tired from training. It got to the final activity of the day and even though I knew I wanted to participate, I just couldn’t, I was already sore and feeling faint, despite the buckets of water I had been drinking all day, and I knew I’d be in a lot more trouble if I participated versus sitting out. Begrudgingly, I pulled my coach off to the side and told her there was no way I could do final activity. She had alerted the camp instructors and I could sit out. While it was heart breaking not to participate, I am thankful that I knew myself well enough to know “enough is enough.”
As a young adult, I still have this limitation; I’ve been awkwardly asked to leave certain aerobics classes because instructors will see my scar (and how red I was getting) and immediately assume I was unwell. However, I have found ways to stay active that is both heart and mind health. I continue to dance and perform, and my instructors are all so awesome to let me rest when I need to. I have recently started (and fallen in love with) Pilates, which has a huge emphasis on effective and deep breathing. Breathing is an important part of my self-care, not just because it is essential to stay alive, but it allows me that moment of introspection so I can check in with my body and see what I need. I instruct my clients daily, in each session, to stop…breath… and think about what they need too. I have been very intuitive about how my body is working (thanks to my medical care team!) and developed ways to make sure I pay attention to it always. I am thankful every day for this skill. Listening to myself and my heart gives me, in my opinion, a superpower!
To learn more about Heart Valve Disease and how to raise awareness go to www.valvediseaseday.org
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