About Me (In My Own Words)
I am a 38 year old who was diagnosed with a bicuspid aortic valve when I was a toddler. I have had bi-yearly or yearly echos since then but have begun to befuddle my cardiologists. I am currently scheduled for a TEE next week. I have been diagnosed as my aortic stenosis being between moderate to severe. My valve is also leaky. The ejection fraction is extremely high out of the valve, hence my doctors thinking previously it was time to replace the valve, but when they went in to confirm with a TEE (2ish years ago) they could see that the valve was still opening sufficiently and the ejection fraction does not line up well with how much the valve is actually stenotic. I am symptomatic (chest pain, breathlessness, fatigue, and feeling very lightheaded with exertion; however, sometimes the chest pain lingers and the lightheadedness comes out of nowhere - standing, sitting, etc). My previous cardiologist at Tripler Army Medical Center in Hawaii felt there was an underlying condition. At first he felt, a band of tissue causing an obstruction, which the TEE ruled out. He settled on IST, or Inappropriate Sinus Tachycardia but my new cardiologist believes there is a band of tissue and hence the upcoming TEE. Lots of other things have been ruled out, including lung issues, nutritional deficiencies, etc. Meanwhile, my quality of life continues to diminish. I find myself unable to do a whole lot. If I walk long distances, I end up having lots of chest pain but the fatigue is the worst. I've noticed my ability to do simple chores takes longer and I often have to take breaks to ensure I don't have disabling periods of fatigue (as in, I want to, need to do stuff but I am so exhausted I have to lay down and put my feet up). I am hoping for better answers next week or at least a referral to a cardiologist who may be able to figure out what is going on. I certainly don't want to do a valve replacement if another issue is causing the problem and can be fixed or managed. As of right now, my doctor feels it may be time to replace the valve and is using the TEE to either find a subventricular issue or continue waiting. I am hoping to continue learning more about my condition, maybe hear from others with similar symptoms, and gain support if they do move forward with planning on replacing the valve.
More Info About Me & My Heart
More About Me
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I am from:
Richmond Hill, Georgia
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I was diagnosed with:
Aortic Stenosis
Bicuspid Aortic Valve
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My surgery was:
Aortic Valve Replacement
