Below, Sheila shares the story of her bicuspid aortic valve disease, the circumstances that led her to a heart valve replacement, and what it means to receive truly personal medical care.
When I was young, my mother told me I had been born with mitral valve prolapse. It’s often characterized as a heart murmur and nothing to be concerned about.
I live an active lifestyle and play tennis on a local league. During weekly practice, I noticed a change in my stamina and experienced visual changes as well. Thinking it was connected to allergies, I visited my allergist, who discovered my blood pressure was extremely high.
I didn’t think much of it, but he recommended I see my primary care physician, so I went. He said, “You’re very active and high blood pressure doesn’t make sense.” He knew there was more going on, so I made an appointment that day with a cardiologist.
The cardiologist determined the problem was with my aortic valve, which was deformed. I was born with a bicuspid aortic valve, which has two leaflets instead of three. My valve was basically enlarged. At the time it was 1.5 cm, and they didn’t want to do surgery until it was down to 1 cm. I was scared to death. I couldn’t believe it. Thank God I had allergies, because had I not seen an allergist, I would have never known I had heart disease.
At the time I was diagnosed, my prognosis was for five years. My daughter was in kindergarten.
I saw two other surgeons who wanted to make an incision from the base of my neck down, and they were advocates of mechanical heart valves. They wanted to go mechanical (which may last longer) because of my age (I was 45 at the time), but I knew with a mechanical valve I’d have to take the blood thinner medication Coumadin for life. I’m not one to take a lot of medication, and my active lifestyle doesn’t permit me taking that drug. (Side effects of the medication would have prevented Sheila from playing tennis.) Knowing I’d be on pills for life was disturbing.
I needed support from a surgeon who thought and felt what I felt, and that person was Kevin Accola, MD [Thoracic and Cardiovascular Surgeon].
He was an advocate for a biological heart valve. My husband and I were leaning that way, but I didn’t share it with Dr. Accola. His thoughts and feelings mirrored my own, and that’s when I knew he was the right doctor for me.
I believe in karma, too. Before we decided on a surgeon my husband and I were flying and I opened up a magazine, and it was a medical magazine with all the top doctors in the United States and there was his picture. I said, ‘Whoa, there’s the answer.’
By the time I underwent surgery, my valve had closed to a .07 of a centimeter and my heart had enlarged due to the overworked muscle. Needless to say, the blood flow
throughout my body was almost nonexistent.
Dr. Accola was in tune with the latest technologies. His technique was less invasive than traditional options. I had a smaller incision and much quicker recovery. He even personally chose my room after surgery to ensure I’d be comfortable, and he gave us his personal cell phone number. I opened my mind up and said, ‘God, lead me to the right person,’ and all arrows pointed to him. I was back on the tennis court eight weeks later.
My cardiologists shared with my husband that had I not been proactive, my life expectancy would have been five years. I wouldn’t have lived to see my daughter at the age
she is today.
Because I survived this disease, I volunteer with the American Heart Association. I’ve had phone calls from potential open-heart surgery patients, and I’ve shared my story to give them an idea of what it’s like. I let them know they’re going to be OK. It’s scary, and sometimes they just want to talk to someone who’s gone through what they’re about to go through.
