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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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Scott

Jan 16

Posted by: ACHA
1/16/2013 10:57 AM  RssIcon

Bicuspid Aortic Valve - In 1988, at the age of 24, I had just taken my first job after graduating from Indiana University. I wasn’t feeling well, and made an appointment with a doctor whom I had never seen before. During that appointment, he asked about my murmur. I knew from all of the physicals I had for sports, school and summer camps that I did not have one...and I told him so. Well...over the next 10 years, I met with an Internal Medicine Doctor quarterly and with my Cardiologist yearly. By 1988, the murmur was cool enough to cause doctors to call other doctors over to listen to it. When asked if I had shortness of breath, I would say, “I think so as I really breathe hard after bicycling up big hills.” Needless to say, they always wrote “he claims to be asymptomatic.”

By 1998, I still felt my heart was doing well, but I was tired. I typically napped every evening and every weekend afternoon for 2-3 hours. My cardiologist said it was in my head. I knew that it must be getting close to time so I made an appointment at the Cleveland Clinic, letting the scheduler point me to a good valve cardiologist. During this appointment, he said it is time and showed me the numbers to prove it. Eight weeks later, May 11, 1998, Dr. Cosgove replaced my aortic valve with a Homograft valve. By the fall of 1999, I began working out with the local high school wrestling team and did so for 5 years. I also started riding my bicycle much more.

For many years leading up to 2010, I pedaled around 3,000 miles each year. In 2008, I had an echo-cardiogram and my cardiologist came into the room afterwards and told me that it was time for surgery. I told him that he was wrong and he gave me a 6-month stay. During those 6 months, I bicycled another 3,000 miles. I then had a stress-echo test and the cardiologist came in and said I was right. Fast-forward to 2010. This time, the cardiologist was right. So, on July 27th, Dr. Petterson performed a redo. He replaced the homograft with an On-X mechanical valve. I now take Coumadin every day. Fortunately, by keeping to a consistent diet, this has not been a problem. During both hospital stays, I was visited by Mended Hearts visitors. In addition, a number of Mended Hearts members reached out to me via the phone. These interactions increase the chance that a patient will leave with high hopes. Since becoming a Mended Hearts Accredited Visitor in 2010, I have visited with many varied patients who not only needed inspiration, but inspire me as well. This organization is important enough to me that I became President of the Greater Cleveland chapter in January of 2012. I’m from Beachwood, OH. I am married with four daughters.

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