I have congenital aortic stenosis. It was diagnosed when I was 6 years old after a noticeable heart murmur. It was mild to moderate through grade school and middle school. I was a pretty normal kid, playing sports and all that. I went in annually for an Echo/EKG. At age 13, they noticed it was getting worse and becoming severe (.9 cm opening), so we elected to do the balloon catheterization. After monitoring the results, it was determined that it was NOT successful, but we tried again with the balloon catheterization at age 15. This one was a success. The valve opening was estimated at 2.1 cm. I was back to "normal" again but was not allowed to play basketball/soccer/football in high school. This was a drag because I was and am very athletic. I've monitered my aortic stenosis every since, and have seen the valve slowly deteriorate over time. From the age of 15 to age 30, it has now gone down from 2.0 cm to 1.0 cm. I can still run and jump and play pickup basketball. Once I get a sweat going, I can maintain moderate exercise like basketball or hiking. I cannot however go jogging, or use a treadmill, as I will very quickly tire out. I'm now considered moderate to severe and have Echo/EKG every 6 monhts, in the next couple of years I will have to have another operation. I'm debating on which one. I'm kind of leaning towards valve replacement, but I don't really like my current options. I hope and pray that more science can be developed so that I can live a long and healthy life and raise a family. Published: December 18 ::

I am 62 and have been told I have a heart murmur since I was thirty. I never realized the murmur could "worsen" per se, but now I'm told I have severe aortic stenosis and will probably need to have open heart surgery to replace the aortic valve. So far my symptoms have been mild; only some racing heart beat sensations at night in bed and light headed feeling while walking. Otherwise I feel fine and walk 4-6 miles at least 4-5 day's a week and I also do low impact work outs. I'm not really too worried about the prospects of undergoing the surgery since the procedure is so common and the prognosis seems positive. My biggest question is which kind of valve to get and how will taking blood thinners affect my lifestyle. Everything is relative in this life and after reading the stories of some of the very young people with much more difficult health issues, I feel very fortunate indeed! Thank human ingenuity for our fantastic medical knowledge and the talented physicians who do the work! Published: February 05 ::

I have congenital aortic stenosis and was diagnosed at birth. I have had no surgeries or procedures and have been very fortunate at the age of 51 to have no intervention other than annual monitoring. It has progressed over the years as it is now considered severe, though I remain asymptomatic. The last 5 years or so my Echo/Doppler results have shown no change or signs of progression which is positive, but I am not naive enough to not think that eventually a valve replacement will be required. My Cardiologist thought this would have happened a few years ago, but as long as I remain asymptomatic why do it? I am trying to research minimally invasive aortic replacement procedures and would welcome hearing any experiences that folks have had with this. Published: February 05 ::

Hi, my boyfriend was discovered with aortic stenosis a month back he is 18 years old. Firstly he was diagnosed with an esophageal ulcer and was given medication for that. However his condition just worsened. The doctors after so many tiring tests discovered he has this condition. He is in extreme pain every single day of his life. He is constantly pressing against his chest, and complains of his heart "bursting" occasionally as well. His pain brings tears to my eyes. What is really frustrating me is despite the pain he is in. He has not received any surgical treatment nor are the doctors suggesting it because of his young age. I don’t know what to do now because he isn’t getting any treatment and is in pain everyday? Should he ask for valve replacement or the ballon catheterization surgery anyway or is it really that risky for his young age. If anyone has any comment regarding this please post. Published: February 05 ::

I was born with aortic stenosis, but was diagnosed at the age of three. At the age of four I had my first open heart surgery due to the fact that my aorta was 85% blocked. Five years later I acquired the same condition and had to have another open heart surgery. After the surgery everything seemed to be well until I had a check up four months later. On the check up the doctors realized that there was a problem with the last surgery. The problem was that the muscle of my heart was tearing apart. Thus I had my third surgery to fix what came out of the previous operation. Now I am seventeen years old, I still visit my cardiologist every six months to make sure my "motor" is still running like it should be. Published: November 19 ::

I am 15 years old, and I was born with aortic stenosis. I knew that one day I would need surgery to repair the impaired valve. My family was told that I would get surgery around the time I turned 15. However, in 2003, I became drowsy all the time, was pale as a ghost, had nose bleeds often, and stomach pains frequently. My family knew something was wrong. I was taken to the closest hospital 30 miles away. The doctor discovered I had a bladder and kidney infection. So I was rushed to the nearest children’s hospital where they had a floor that specialized in infections. Later that night after arriving from a five hour drive, the doctor did an echocardiogram and discovered that my aortic valve was separating from its wall. We discovered that I only had three days to live, and the children’s hospital flew in a specialized doctor for conditions like mine. Finally, it was over with. But then, four weeks later, when I was 9-and-a-half years old, I was diagnosed with cancer. Now, I am cured and happy! Published: November 11 ::