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By submitting your story and/or photo to ACHA, you are giving permission for your story and/or photo to be displayed on our website. The stories on this page are the property of the individual who has provided it. Stories may be edited for content. The experiences and opinions expressed are solely those of the individual, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied within these stories.

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Express Yourself

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Jan 16

Posted by: CaptainCardio
1/16/2013 2:28 PM  RssIcon

“She’ll never live.” These were the first words a new mother heard when her child was born. The baby was blue, weighed less than 4 pounds and had a heart “problem.” That child was me. As a child, I never understood exactly what condition I had or its severity. My pediatrician only noted that I had a heart “murmur,” my heart sounding like galloping horses. I knew that I got tired easily during gym class and couldn’t run as fast as everyone else. Sports were not a part of my world, but that was fine by me. I focused on brains, not brawn—and excelled.

Not knowing the severity of my condition and any limitations it posed, I was determined to attend the United States Naval Academy. My dad, a U.S. Naval Academy graduate, was killed serving our country when I was six months old. It was my long-standing goal to honor his memory by attending the Academy and becoming a career officer. Finally, it happened—I was in the first group of women admitted to the Academy, pending medical clearance. I met the academic requirements, passed the physical fitness test, so I expected no problems. The required comprehensive medical exam revealed that I have Ebstein’s Anomaly. I was denied admittance to the Academy. I was devastated. I had never before experienced any major limitations or discrimination based on my heart disease and I was angry.

My new cardiologist informed me that I required no surgery, no medication—I should rest when I got tired, see him annually and consider adoption should I want children since pregnancy would be risky. I always felt somewhat alone with my disease. When discussing weekend plans, I mentioned to a work colleague that I was headed to Boston for my cardiology checkup. She inquired why I was traveling so far (I worked in New Jersey) and I informed her that I had a rather rare condition called Ebstein's Anomaly. She broke down in tears and told me that her baby was just diagnosed with Ebstein’s Anomaly! She had been told that most children born with Ebstein's do not survive, and knowing that I have this condition gave her hope. Seeing her pain turn to joy planted in me the desire to one day work with women and children with heart disease.

I am determined not to let my heart disease limit me. I make exercise an integral part of my life. I swim, walk, participate in indoor triathlons and take beginning boxing! Giving back to women who are living with heart disease is a privilege. I currently volunteer with WomenHeart, and look forward to working with the Adult Congenital Heart Association. Volunteering connects me with other heart patients—I no longer feel alone. At last, I have taken control of my health by taking ownership of the things I need to change to improve it. I try to stay positive and learn from setbacks. I want to wear out, not rust out!

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