Patient Comments: Aortic Stenosis - Describe Your Experience

Question:

Please describe your experience with aortic stenosis. Submit Your Comment

Comment from: Meekayb, 45-54 Female (Patient) Published: May 02

I am 47 and diagnosed with aortic stenosis many years ago, it is just now turning into the severe stage with surgery looming ahead in a couple months. I went from echo tests every 12 months to every 6 months to 4 months. I really haven't had many symptoms but am noticing how tired I am even when I get a good night's sleep. I am out of breath easily too. Trying to decide on the type of valve to get. This is awful.

Comment from: Grace1, 65-74 Female (Patient) Published: September 03

About 5 five years ago I was diagnosed with aortic stenosis (AS) after a heart murmur was found. I also have lupus and have antibodies on the valve. I was recently told my AS is severe and I should face a replacement within 6 months, but I do not qualify for TAVR (transcatheter aortic valve replacement). At night I have more symptoms of irregular heartbeat, sitting up in bed to catch my breath. I am not sure I want to undergo open heart surgery.

Comment from: BrianN., 25-34 Male (Patient) Published: April 28

I was diagnosed with mild aortic stenosis (AS) and regurgitation when I was three years old. My gastroenterologist first heard my murmur which led me to my first cardiologist appointment. I have seen many amazing doctors, and have been on enalapril (Vasotec) since I was very young. I was told not to play contact sports, and to not hold my breath for a long period of time. I am not 25, and there has been no change over the years. In fact, because of that, the condition has actually gotten better, in a way. I am allowed to exercise, lift weights, and do whatever I want. The only problem I have is I am paranoid about my heart. I get palpitations, and many of the symptoms that would go with AS, but it's really just my severe panic disorder, which I have because of anxiety of my heart. My doctor said I will need surgery in my 5th or 6th decade of life.

Comment from: EFW, 65-74 Male (Patient) Published: March 24

If the bicuspid valve is narrowing, causing extra pressure on the heart, and eventual heart failure, why do they leave it so long before they operate! Be careful when choosing a valve. I was told by my surgeon that a prosthetic valve could be replaced later without open heart surgery for aortic stenosis. I found out later that this was true only if the valve was at least 3 cm. My new one is just 2.1 cm. Then I was not told that the new bovine valve could also calcify, which is happening. They gave me no advice, and left me to choose. It should have been done earlier, and with a metal valve.

Comment from: journeyback, 65-74 Male (Patient) Published: February 10

At 51 years old I was told I had mitral valve syndrome. For the record I am now 66 year old male recently diagnosed with aortic stenosis. I was having some isolated dizzy spells, heart murmurs and rapid heartbeats for no reason at all. I have since lost 15 to 20 lb., exercise, changed my diet, and ride a bike strenuously for 1 hour and have logged in approximately 3000 miles. I really don't have problems when I exercise strenuously. It's only at night that I feel the ticks in my chest but then they subside. My dizzy spells have subsided and I feel better now that I am exercising and on a better diet. No smoking, drinking or over eating. I am scheduled to go for yearly tests to monitor the progression of the aortic stenosis. Hopefully it will not get any worse.

Comment from: nanny, Female (Caregiver) Published: April 10

My husband has Alzheimer I am not sure what stage but could be stage 6. Now the doctor has told us he has severe aortic stenosis. He said surgery would make his condition worse. He is having a rough time without this new problem.

Comment from: seniorcit, 65-74 Female (Patient) Published: September 09

Twenty months ago my aortic valve was at the severe level of stenosis and I had valve replacement surgery with a pig valve. A recent echocardiogram and transesophageal ultrasound showed a much narrowed aortic valve and the cardiologist suggested another replacement surgery with a mechanical valve. I see the cardiac surgeon tomorrow. I do not want another surgery, I am still very tender from the last one and the thought of weeks of pain and recovery is daunting. I need to gather more information and review the recent tests, possibly a second opinion before I make my decision. I am 70 years old.

Comment from: ASarmy1987, 45-54 Female (Patient) Published: March 14

I am 45 and was told I have mild aortic stenosis (AS) with bicuspid aortic valve when I was 19. I was in the Army at the time. Military didn"t make me leave. I was watched all my pregnancies and worked full term with no restrictions. I get short of breath with exertion now that I am older, have heart palpitations and chest pain, also dizzy spells, and full checkup with a cardiologist every 2 years. No medication is needed. Best advice I can offer keep your weight within normal limits, no smoking, no drugs, and take your antibiotics as ordered.

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.

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.

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.

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.

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!

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.

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.

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!

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.

Published: July 25

I was born with aortic stenosis and had surgery at age 7 to correct it. I was followed for years with no problems, and then when I was 43, I began feeling dizzy during my daily runs and passed out at the completion of one run. I saw the cardiologist shortly before Christmas and had an echocardiogram, which showed that my mild-to-moderate stenosis had become severe in the space of six months. I had surgery in February of 2000 and received a homograft valve. I've been fine ever since and run four miles on a daily basis. I do not find aortic stenosis a hindrance to living life. I rock climb, run, hike, strength train, bike, do yoga, and dive. It is important to know your limits, take care of yourself, and have a good relationship with your cardiologist.

Comment from: Dee, 55-64 Female (Patient) Published: December 09

I get feelings of exhaustion after only simple household tasks, followed by shortness of breath.

Comment from: Larry, 55-64 Male (Patient) Published: July 24

I am a 56 yr old male and about 4 months ago I started getting dizzy spells and had to go down on 1 knee and hang on to what ever was at hand as I also had a episode of passing out while going up my stairs in my home. I also had chest pain that was like a heavy pressure and heaviness in my arms and legs and shortness of breath with profuse sweating, then I passed out for short period of time. I came to after about 30 to 40 seconds breathing hard and gasping for air. This lasted for about ten minutes. So I sought doc advice and was sent for meritorious tests. The echo gram was the test that showed I have severe aortic valve stenosis and then was sent to a heart hospital to consult with a cardiologist. They are now giving me a catherization to see how bad my heart is damaged and then a aortic valve replacement. Shortly I pray and hope as I have a 6 yr old to raise and a wife with a broken back . Thank God for modern day equipment that can detect these things before its to late to do anything.

Comment from: Nick, 25-34 Male (Patient) Published: February 05

I am a 25 year old male. I was born with aortic stenosis. At less than a day I had to have open heart surgery to try and repair my aortic valve. All they could do then is snip the valve to make it open wider. They gave me a 50/50 chance to make it. At two years old I had a pigs valve put in as a conduit valve on the left side of my heart. I could run and play but no contact sports. At the age of 12 they did the "Ross Procedure" where they took out my bad aortic valve and put my pulmonary valve there and then put a human valve where the pulmonary was. I get checked every year with my cardiologist and I am doing fine. Children's Hospital in Pittsburgh is the best. The same surgeon did all three of my surgeries and I am forever grateful.

Comment from: 65-74 Female (Patient) Published: December 18

I am 74 years old and have had aorta stenosis recently diagnosed. The doctor is taking a wait and watch path unless I have symptoms. I also have atrial fibrillation, osteoporosis, high blood pressure, high cholesterol, and take medicines for all. I am very active. I thank the Lord for doctors and medication every day.

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Comment from: stephw, 25-34 Female (Patient) Published: October 24

I was born with aortic stenosis and at the age of 6 months had my first open heart surgery. At the age of 10 I started to have some symptoms and they discovered the valve had narrowed. They decided to do the balloon. The day after Easter I went in for the procedure and they were not able to successfully complete it. About two weeks later I had open heart surgery and it was a success. Then at the age of 16 I started to have some symptoms again. Once again the valve had narrowed and they decided to try the balloon again they wanted to wait until I was a little older to replace the valve. This procedure was a success. At the age of 21 I went in for my annual checkup and once again it had narrowed. They decided it was time to replace it. They had first told me they were going to use a pig or mechanical valve and I would not be able to have children do to blood thinners. Thankfully they did a little research and found out that they were doing a new procedure where they would take a human valve and use the tissue to graph out a new. On and this type of valve it did not require blood thinners. We decided on that of course. I went to Sacramento and the surgery was a success. I was in and out of the hospital in 4 days. I feel great and it has been eight years they want me to hurry up and have children because they do not know the longevity of it. So I am hoping to have a child withing this next year. It will have to be monitored but I am just thankful for the technology and how much it's advancing each year who knows what they will be able to do even in the next couple of years.

Comment from: amamey, 13-18 Female (Patient) Published: October 10

I was born with aortic stenosis and a bicuspid aortic valve. When I was about two weeks old, I stopped breathing and turned blue. I turned out to be fine, and I am 18 years old now. I have a murmur and a leakage in my heart. I get an echocardiogram and EKG every year, and I have to be careful not to do too much strenuous activities. Other than getting dizzy, random mild chest pains and trouble breathing every now and then, I am fine. Depending on how it goes in the near future, I may need to get a balloon angioplasty, but everything is looking good so far.

Comment from: t.s.i., 25-34 Male (Patient) Published: September 25

I was born with a severe case of aortic stenosis, so severe my parents were told I didn't have an aortic valve. At the age of 15 days I had open heart surgery to create an aortic valve since there are no transplant valves that small. Life was normal for 18 years but as my heart grew the man made valve didn't, so I underwent surgery and had a donor valve put in place. That lasted almost two years until my body rejected it, and they again replaced the valve with a my pulmonic and a donor valve replaced my pulmonic. I will again have to have surgery in the distant future but life with aortic stenosis is, if anything normal. I was able to do all things other kids did the only restriction was on contact sports like football. For anyone going through this defect know that you will have a normal life, and the risk is well worth the reward.

Comment from: patsy six, 75 or over Male (Caregiver) Published: September 25

I have been told I have aortic stenosis. I am very, very tired and weak and have no strength. My muscle tone is 18 and normal is 25. I am very dizzy and get very shaky. I got dizzy the 1st of Sept and in the hospital three days. I am getting weaker everyday. They have me on depression medication and anxiety medication plus Plavix and cholesterol medication. My blood pressure is very low sometimes 95/45/62. I have been very dizzy and try to walk it off.

Comment from: 55-64 Female (Patient) Published: August 05

I am a 57-year-old female who has always had relatively good health. I was diagnosed with a heart murmur at around 30 years and have not had any symptoms until my 50s. I was diagnosed six months ago with aortic stenosis caused by calcification of the valve. It has a 9 cm opening, and I was advised to have the valve replaced at 7 cm. My symptoms are faint feelings after a sensation in the chest from interrupted blood flow and some occasional labored breathing in high humidity. However, I do fine with exercise.

Published: July 23

I have congenital aortic stenosis and am now 24 yrs of age. I had two balloon cauterizations performed when I was 3 months old and later when I was 2 or 3 yrs old. I had a valve replacement when I was 9 (tissue) and am now having the next valve replacement in 3 weeks. I now have severe stenosis and am frequently out of breath, very swollen in the legs, arms, and hands, and fall asleep randomly during the day. I also experience depressive symptoms which from what I've read is all related. Generally, I feel sick and exhausted at all times.

Published: June 26

When I was a teenager I was diagnosed with a heart murmur. Not until I was 45 years of age did I see a cardiologist who said I had aortic stenosis. now at 49 years of age I am starting to see symptoms, I had a migraine for the second time in my life time just one month ago, and feel now at times as if I will faint, I now have upper right quadrant abdominal pain and had a CT scan done. I will visit the cardiologist in just a few days for follow up.

Published: June 17

Following an increase in the frequency of migraine headaches; an unexpected discovery of hypertension; and a diagnosis of glaucoma, my primary physician suggested a battery of tests to determine the cause. I had an echocardiogram which indicated a mild to moderate aortic stenosis. Several months later, I fainted after walking late in the afternoon on a particularly hot and humid day. The fainting occurred after having dinner with friends (outdoors), which included drinking some beer. Due to the sequence of events, the fainting spell was not so unusual. However, I was taken to the emergency room by ambulance, and it was suggested that I see the cardiologist for further assessment. I had another echocardiogram and it was determined that approximately five months following the earlier cardiogram the aortic stenosis was now considered moderate. I have been instructed to call the cardiologist if I have chest pains, another fainting spell, and/or swelling in my legs or other symptoms. I will have another echocardiogram in six months, if I do not have symptoms before then.

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Comment from: heart and hip, 55-64 Male (Patient) Published: February 05

I am a male age 57 and was going in for hip replacement. I was told that my hip operation was canceled because I had scarring of the aortic valve (called aortic stenosis). Now I need to go in for more tests. The doctor told me that the only way to repair the heart is to replace the aortic valve. I would appreciate any advice.

Comment from: Marco Maluda, 0-2 Male (Caregiver) Published: February 05

My son was diagnosed with critical aortic stenosis right after he was born. When he was only few ours old he had his balloon cathorization. That did not help at all and when he was 1 month old they put him from heart transplant list. Luckily we waited only 4 days for new heart. Now he is almost 3 years old and he is doing great. Of course we have some bad days too.

Comment from: Apr442, 19-24 Female (Patient) Published: November 19

I was diagnosed with severe aortic stenosis and was expected to have my first open heart surgery at 6. I am now 20 years old and have been lucky to have gone so long without needing it. After trouble breathing and becoming harder to walk long distances I am getting ready to get the valve replaced. Without doing so I won't be able to live a normal life and have children. The important part is to time the surgery before the valve weakens too much.

Comment from: Impaired heart, 65-74 Male (Patient) Published: October 13

At 71 years old, I found out today from an ultrasound scan that I have aortic stenosis as well as a leaking mitral valve. It is thought that the latter is probably congenital. I have fairly low blood pressure at 100 to 110 over 60 to 70, and my resting pulse rate is less than 60. My BMI is around 21 and has never been above 23.

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