Sara Bielanski’s Story - Heart Valve Disease Awareness Day

Reader Story

Sara Bielanski’s Story

My name is Sara. I am a wife, daughter, sister, aunt, friend, professional singer, teacher, and heart survivor. My heart valve is a Sorin Mitroflow Aortic Valve (bovine) and is 7.5 years old. I was born with congenital heart disease, specifically, a unicuspid aortic valve. For 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 to a 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 would give me the 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 a unicuspid 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 scan, whatever. It is integral to have a pillar of strength, a constant support…my husband is my hero. During the summer of 2010 I 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, I went to an appointment set up with my cardiologist months prior to that; I then learned that my stenosis had progressed quite a bit, and that I 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, but by her demeanor, by how 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, (7.5 years later and age 42) I am feeling very good). At this point, I am working closely with a stress management therapist. I am aware that my valve will need to to be replaced again in the future, but I feel confident in my team of doctors and the knowledge, responsibility and insights that I’ve gained from this disease. I cannot say enough about Mass General and B&W 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 throughout your life, even if it’s just one person. I am very proud to be writing this, and to be a brave and resilient survivor of this complicated disease. My scar is my badge of honor, an every day reminder of the gift of life.