Aug 9
LaurenE , Posted on SUPPORT NETWORK Blog

Dr. Lauren Evanovich Sharing My Story of Living with a Congenital Heart Defect

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My life has always been affected by CHD, in-fact, I had my first open heart surgery at 10 months old.
I have a type of a congenital heart defect, a CHD, which are various structural problems with my heart present at birth. I was born with a ventral septal defect (VSD) and a bicuspid aortic valve. Most people are born with a tricuspid valve. In that surgery, they repaired my VSD and a hole in my left artery, the left side of my heart, and tried to cut my aortic valve from a bicuspid to a tricuspid. Due to my age and my heart being so small, the success of that at the time was unknown. The doctors told my parents that they thought it would have been fine, but it was likely I'd have to have another surgery in my 40s or 50s to repair the valve.

Growing up, I went to the cardiologist, usually based at teaching universities, every six months. I did that throughout my childhood and high school. I went on to college and got my undergraduate and Master’s degrees in Special Education from the University of Connecticut. I worked with students with emotional and behavioral disabilities in Connecticut, all the while continuing to go for regular cardiology check-ups. At the end of my second year of teaching, I started feeling fatigued and frequently experienced shortness of breath, so I called my cardiologist.

That was in 2011, I was 23 turning 24, and my cardiologist said my standard heart rate, EKG, and blood pressure numbers were significantly off. The bicuspid valve fix that they told me I would have to have replaced in my 40s or 50s stopped working properly. This meant it was time to call the surgeon.

After some stubbornness on my part, I had my second open heart surgery in June of 2012. I now have a prosthetic aortic valve – a synthetic bovine valve - which my surgeon calls “the Cadillac of valves.” When the doctors removed my valve, they also discovered that my aorta had expanded so much that I had to have an aortoplasty. To describe this procedure, it’s like taking a closed Pillsbury dough canister, popping it open, and the dough comes out the side. Essentially, the doctors had to remove all that extra dough and re-sew it back together. It was about a 3-month recovery, but it took about a year for me to feel back to "Lauren normal." It is a long time but the doctors explained to me that your heart is a muscle, so the muscle memory had gotten used to working the “broken” way for so long, that it would take time for the new muscle memory to “fix” itself and in-turn make me feel better.

About a year after surgery, I had the opportunity to get my Doctorate, so I left teaching high school and went to Louisville, Kentucky to attend the University of Louisville for my degree in Curriculum & Instruction Special Education. I graduated in May 2016 and moved to Tampa. Here I have been able to continue my volunteer efforts with the American Heart Association (AHA). Since my second surgery, I've really been passionate about the preventative care and research-based mission of the American Heart Association because my doctors have always been involved with the Heart Association through research. Being able to put a face to a story often helps people to know that research really does make a difference. I have a prosthetic aortic heart valve in-part because of life-saving research the American Heart Association funded.

I’m turning 30 in about 2 weeks, which is a miracle. I think that it's easy for a person with an invisible illness to think “Why me?” and “What's the purpose of my having it?” For me, my why and my purpose if sharing my story. If I can share my life with just one person, and they can find comfort, or they can connect with me and know that they're not alone, I think it's all worth it.

  • zailah68
    Thank You Dear. I need this
  • Oge4815
    Thank you for sharing such a moving story, LaurenE. Have you heard about the American Heart Association's heart valve ambassador program?
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