Patient Comments: Aortic Stenosis - Describe Your Experience

Please describe your experience with aortic stenosis.

Comment from: DramaQueen241994, 19-24 Female (Patient) Published: January 14

I am 19, almost 20 years old. I was diagnosed with aortic stenosis when I was only a few days old. I had 5 surgeries on my heart before I was 1 year old. My first surgery was when I was 1 week old. I have had 12 surgeries in total. Living with aortic stenosis has been difficult for me. I am not able to run without getting out of breath. I go to see the heart doctor every year and they do many tests on me to make sure everything is going good. The last 4 years have been good when I go to see the doctor. I have to take two big pills of penicillin before any procedures that could cause dirty blood to go into my heart.

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Comment from: Alex, 25-34 Male (Patient) Published: December 18

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.

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Comment from: scary stuff, 45-54 Female (Patient) Published: July 14

I have just been diagnosed with a grade three ejection systolic murmur and left ventricular hypertrophy... this is after 18 months of having extremely high blood pressure. I'm waiting for a stress echo to see if I have aortic stenosis. I can't walk up a flight of stairs without stopping and being breathless. I have a really horrid fluttery feeling in my chest and am so tired all the time. I also have asthma all new to me unfortunately, but people's experiences give me positive feelings, thank you.

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Comment from: jane, 45-54 Male (Caregiver) Published: March 31

My husband has aortic stenosis. He went in for valve replacement 4 weeks ago but they could not replace the valve because it was too calcified, he does have a rare disease hypercholesterolemia. The surgeons are now going to give him a transcatheter aortic-valve implantation (TAVI) in a few weeks but I don't know much about this.

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Comment from: Tri1MoX1, 55-64 Male (Patient) Published: October 22

I have been diagnosed as having aortic stenosis (moderate to severe) based on an EET electrocardiography test). I currently have a bovine aortic valve inserted in 2007 due to an aortic aneurism. Because of my weight and 2 previous open-heart surgeries, my cardiologist does not consider me a good candidate for another valve implant. Shortness of breath (coupled with asthma) is my main symptom.

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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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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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