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Sara Bielanski’s Story

Age 37, Cambridge, MA

Provides support

Sara's Story

My name is Sara. I am a wife, daughter, sister, aunt, friend, opera singer, teacher, heart survivor-warrior, and advocate. I am also 15.5 weeks post-op for an AVR. I was born with congenital heart disease, specifically, a unicuspid aortic valve. For almost 3 decades, my heart valve operated as more of an “insufficiency”…given that assessment, I slacked off starting around the age of 27 and then didn’t have an EKG, Echo, or visit a cardiologist for 5 years. In 2008, at the age of 32, I went back toa cardiologist; I went alone, assuming I would be given the usual answer: “insufficiency”. Was I wrong. I learned that my valve had become stenotic, and that I was considered a high-risk pregnancy should my husband and I pursue that path. I was stunned. I went alone, because I thought the appointment would be nothing, that the doctor wouldgive methe same answer I’d always received, and thus, as a result, I always played down my disease to others.I figured I was someone who couldn’t run fast, and had to take meds before dental cleanings…anyway, that day in 2008 changed my life. I called my husband immediately. From there, we began to take action: I became aware, I became educated about my heart. We started learning everything we could about AS…we researched bicuspid valves (we didn’t learn that mine was auni until surgery), high risk obstetricians, heart diets, exercise, everything. I found a phenomenal cardiologist who is meticulous and watched me very carefully during that period…my husband now accompanies me to every single heart appointment, whether it be an Echo, a visit, CT, whatever. It is integral to have a pillar of strength, a constant support…my husband is my hero.During the summer of 2010I was working in Italy for 7 weeks. While there, I was having some fatigue issues, as well as SOB, and anxiety. I just assumed I was overheated and overworked and possibly needed anti-anxiety meds for the stress of singing 4 roles in different operas. Wrong again. Upon my return to the states, Iwent toan appointment set up with my cardiologist months prior to that; I then learned that my stenosis had progressed quite a bit, and thatI needed to start thinking about speaking with a heart surgeon. Another round of intensive research began…the next several months of “watchful waiting” proved to be a sort of purgatory, if you will. It’s a profound experience to live each day waiting for something to get worse inside of you: AS is very much about timing in some cases…well, after another big work project in April 2011, and months of back and forth about the timing of surgery,I knew immediately that summer 2011 would be my time. I had met Dr. W and knew that she was “the one”. We were blown away by her- not just her credentials and reviews, butby her demeanor, byhow down to earth and candid she is. I cannot, to this day, see her without becoming choked up- she’s a miracle worker.”Beatrice” (my new bovine valve!) became a part of me on July 6th, 2011. Today I am feeling very good, despite 2 minor setbacks (kidney stone, and then a grand-mal seizure from med withdrawal). I am in cardiac rehab, and am working closely with a nutritionist, as well as taking stress management classes. I cannot say enough about Mass General and BW in Boston. I am so lucky to live in a city with some of the best hospitals and doctors in the world. Again, I cannot emphasize enough the importance of supportive relationships. Understand that recovering from open heart surgery is forever life-changing, and it will be important to have a solid group of loved ones with you. I am very proud to be writing this, and to be the brave and resilient survivor of a complicated disease. My scar is my badge of honor, an every day reminder of the gift of life.

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Sara is interested in giving support to other women with heart disease. Contact her if you'd like to receive support.

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