Patient Comments: Aortic Stenosis - Describe Your Experience

Please describe your experience with aortic stenosis.

Comment from: Chuck, 55-64 Male (Patient) Published: February 05

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!

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Comment from: tbone, 45-54 Male (Patient) 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.

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Comment from: 13-18 Female (Caregiver) 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.

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Comment from: napaz, 13-18 Female (Patient) Published: November 19

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.

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Comment from: LP, 13-18 Female (Patient) Published: November 11

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!

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Comment from: mrg, 3-6 Male (Caregiver) Published: September 25

My son was diagnosed with moderate to severe congenital aortic valve stenosis and coarctation of the aorta when he was two years old. He underwent valvoplasty to reduce the heart pressures from 67 to 40. We monitor his condition with echocardiograms, EKGs and heart ultrasounds semi-annually. He is now four and the heart pressures remain at 40. He has never had any noticeable symptoms. The doctors are still considering the options to correct the coarctation to include either a stint or possible surgical intervention.

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Patient Comments

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Aortic Stenosis - Side effects Question: What side effects did you have with your aortic stenosis?
Aortic Stenosis - Cause Question: What was the cause of your aortic stenosis?
Aortic Stenosis - Symptoms Question: What were your symptoms of aortic stenosis?
Aortic Stenosis - Treatment Question: What types of treatment, tests, or medications have you received for aortic stenosis?

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