Longest period known before aortic valve replacement needed

[CAG12345]

I have been trying to research the best case scenario of how long with asymptomatic moderate aortic valve stenosis anyone has gone before needing valve replacement?

I don't find alot of research data on this...just avg time to death if no surgery and symptomatic and severe.

Would appreciate anyone's input from research and data they have seen and personal experience as well.

Thanks, everyone!

 

[Teapotimus]

I have been trying to research the best case scenario of how long with asymptomatic moderate aortic valve stenosis anyone has gone before needing valve replacement?

I don't find alot of research data on this...just avg time to death if no surgery and symptomatic and severe.

Would appreciate anyone's input from research and data they have seen and personal experience as well.

Thanks, everyone!

I was diagnosed with severe stenosis at 12, just turned 34, no surgery.

 

[CAG12345]

I was diagnosed with severe stenosis at 12, just turned 34, no surgery.

Thanks for sharing your experience. Have you had symptoms during this time, like chest pain, shortness of breath or fatigue?

 

[Teapotimus]

Thanks for sharing your experience. Have you had symptoms during this time, like chest pain, shortness of breath or fatigue?

No, went through school playing sports without issue. Got lazy in my 20's after a back injury, still no symptoms.

Over the last 4 years I've been exercising regularly, weights, calisthenics, and HIIT cardio, no symptoms.

 

[CAG12345]

That is great So glad to hear this. I wonder whether it is different prognosis wise if ones stenosis starts as a child from when it starts as an older adult.

 

[pellicle]

That is great So glad to hear this. I wonder whether it is different prognosis wise if ones stenosis starts as a child from when it starts as an older adult.

I was diagnosed at about 5, had first OHS about 10.

It all just varies. My best advice is just monitor and follow the data for you. Make peace with not knowing and live each day.

 

[SatoriFound]

My husband found out he had moderate AS, and possible BAV, in January 2023 and by June 2024 it had moved into severe. That said, he could have had moderate AS for years prior. He didn't know he had a heart issue until they told him about the AS. The first time a doctor expressed concern about his heart murmur was in 2017. He has always been active and generally worked out 5 times a week for most of the past 15 years. He has no clue if the workouts gave him symptoms, because he was how he had always been. He is 51,

 

[CAG12345]

My husband found out he had moderate AS, and possible BAV, in January 2023 and by June 2024 it had moved into severe. That said, he could have had moderate AS for years prior. He didn't know he had a heart issue until they told him about the AS. The first time a doctor expressed concern about his heart murmur was in 2017. He has always been active and generally worked out 5 times a week for most of the past 15 years. He has no clue if the workouts gave him symptoms, because he was how he had always been. He is 51,

Thank you for letting me know what your husband's experience has been. Does he have symptoms now? I am hoping not.

 

[CAG12345]

I was diagnosed at about 5, had first OHS about 10.

It all just varies. My best advice is just monitor and follow the data for you. Make peace with not knowing and live each day.

Thank you. I am balancing research and planning with living each day. It's good advice.

 

[dick0236]

When I was born, in 1936, my parents were told I had a "heart murmur". I lived a normal childhood, teenage, and young adult life without treatment or limitations......surgery was not an option in those days. When I was 30 and in my final year in college I felt unwell and went to the student health service at UofKy. They referred me to the cardiology department. After a series of tests, I was advised to have surgery to replace my aortic valve ASAP. I put off the surgery for about nine months to graduate first.

I was 31 when I had the valve replaced with a mechanical aortic valve. I am now 88+ and still have that original valve. My life with the valve has been "uneventful" except for a stroke 7 years post op. Doctors tell me my valve will still be "ticking away" when I draw my last breath.

 

[Jeff Lebowski]

My aortic stenosis has become severe in the last two years. In previous years it was moderate. To be honest, I never even knew I had aortic stenosis until I was 45 years old.
Until two years ago I was running ultra marathons (trail runs between 50 and 100 miles). I have run more marathons and half marathons than I cant remember (my average pulse rate was around 150 bpm).
I mention this because aortic stenosis can reach critical threshold and lead to death in a very short period of time, you don't want to gamble with that.
If I had the experience I have today at that time, I would have left the challenging activities I was doing until two years ago years ago.

 

[SatoriFound]

Thank you for letting me know what your husband's experience has been. Does he have symptoms now? I am hoping not.

Well... he is currently in the hospital after aortic valve replacement and ascending aortic aneurysm repair. he was in afib post surgery but CardioVersion (shocking the heart) and now has normal sinus rhythm. Fingers crossed it stays. We are waiting on inr to be in therapeutic range so they will discharge him. The doctor said it was 1.8, so hopefully the next labs will be over 2.

 

[SatoriFound]

When I was born, in 1936, my parents were told I had a "heart murmur". I lived a normal childhood, teenage, and young adult life without treatment or limitations......surgery was not an option in those days. When I was 30 and in my final year in college I felt unwell and went to the student health service at UofKy. They referred me to the cardiology department. After a series of tests, I was advised to have surgery to replace my aortic valve ASAP. I put off the surgery for about nine months to graduate first.

I was 31 when I had the valve replaced with a mechanical aortic valve. I am now 88+ and still have that original valve. My life with the valve has been "uneventful" except for a stroke 7 years post op. Doctors tell me my valve will still be "ticking away" when I draw my last breath.

Did they tell your parents the murmur was "nothing"? That's what they told hubby's parents in the 70s. They said it was probably from his heart being positioned slightly different due to his pectus excavatum.

He felt capt for years, but he thought it was because he drank so much. After being sober 2 years he thought he shouldn't be so tired. Thought it was low testosterone. PCP rolled that out, among other things, did an ekg and referred him to cardiology, at 50.

 

[dick0236]

Did they tell your parents the murmur was "nothing"? That's what they told hubby's parents in the 70s.

I doubt they would alarm my parents back in the 1930s since there was no way to fix the problem. Valve replacement, where the heart had to be stopped, was not done until the invention of the "heart/lung machine".......in the late 1950s. The first successful valve was implanted in 1960.

 

[CAG12345]

My aortic stenosis has become severe in the last two years. In previous years it was moderate. To be honest, I never even knew I had aortic stenosis until I was 45 years old.
Until two years ago I was running ultra marathons (trail runs between 50 and 100 miles). I have run more marathons and half marathons than I cant remember (my average pulse rate was around 150 bpm).
I mention this because aortic stenosis can reach critical threshold and lead to death in a very short period of time, you don't want to gamble with that.
If I had the experience I have today at that time, I would have left the challenging activities I was doing until two years ago years ago.

Thank you. For how long was it moderate before it became severe? And how long after severe diagnosis did symptoms start and was surgery recommended?

 

[Jeff Lebowski]

Thank you. For how long was it moderate before it became severe? And how long after severe diagnosis did symptoms start and was surgery recommended?

I didn't see any symptoms. As I mentioned before, I did not know that I had aortic stenosis until 7 years ago, and my condition was not at the level of surgery in the controls made for seven years. in the control made last year, I was told that I had reached the level of surgery.

 

[CAG12345]

Thanks, Jeff, for that information. I didn't know how many years ago you were first diagnosed, just that you were 45 at the time . And it's really helpful to me to hear from others the range of time from moderate to severe and time from severe to symptoms and recommended surgery as I go forward, rather than only the tiny bit of published data which seemingly to count from severe ex with symptoms. I appreciate your posting response.

 

[CAG12345]

Thanks, Jeff, for that information. I didn't know how many years ago you were first diagnosed, just that you were 45 at the time . And it's really helpful to me to hear from others the range of time from moderate to severe and time from severe to symptoms and recommended surgery as I go forward, rather than only the tiny bit of published data which seemingly to count from severe ex with symptoms. I appreciate your posting response. I am so glad you came through the surgery well.

 

[macdaddy]

I was diagnosed in March of 2023 with moderate, no symptoms, routine GP visit sent me to a cardiologist. Eight months later, it was another echo and they diagnosed it as severe. I waited another year (insurance reasons) and based my decision on the tesst results; pressure in that chamber was ever increasing. Advice from everyone I brought it to was don't wait until you are symptomatic; and end of July had a mini-AVR...still wasn't symptomatic...so woke up feeling worse than when I went in.

Best advice I've seen in here was from Pellicil, monitor the test results...no need in doing any further damage that "might" not be able to be undone.

PS I'd had my bicuspid murmer since childhood...the stenosis...I don't know when that actually began. Best wishes to you.

 

[SatoriFound]

I doubt they would alarm my parents back in the 1930s since there was no way to fix the problem. Valve replacement, where the heart had to be stopped, was not done until the invention of the "heart/lung machine".......in the late 1950s. The first successful valve was implanted in 1960.

That makes sense. Nowadays it sounds like they investigate murmurs more thoroughly than even back in the late 70s when my husband's parents were told don't worry, it's just an innocent murmur. I don't know that knowing about his bicuspid valve would have really changed anything though. It may have made his parents more protective and not let him participate in certain activities. That would have been sad.