New Member

[skumpet]

Hello,

I'm new to this board, I found it online when searching out information about moderate aortic stenosis which I was just diagnosed with today. I'm still feeling stunned, unsure of what I can or can't do now such as eating or exercising. I haven't felt any symptoms whatsoever, I actually feel like I'm in the best shape of my life at 54 years old. I've been training for a marathon and not sure if I can continue that or the chin-ups and push-ups I do every day. I've yet to meet with a doctor to discuss the results or plan of action but so far what I've read online hasn't eased my mind. I know looking online isn't the best thing to do and the email with the results even suggested waiting to review with my doctor before reading, but who's going to do that? Lol. Anyways, this looks like an informative and compassionate community and I hope to gain more knowledge and piece of mind as I read the many posts here. Thanks for reading.

 

[Chuck C]

Welcome to VR!

Sorry to hear about your diagnosis, but glad that you found us.

I found it online when searching out information about moderate aortic stenosis which I was just diagnosed with today. I'm still feeling stunned,

That is totally normal. I was close to your age when I was diagnosed with moderate aortic stenosis- 52. It can take awhile to adjust to your new reality. This forum helped me a great deal in this regard, and I expect it will for you as well. What you will learn is that life is very normal with aortic stenosis, there is a very successful cure for it- surgical valve replacement, and that life is very normal after surgery. It is hard to imagine that life would be normal after OHS, but it really is.

unsure of what I can or can't do now such as eating or exercising.

I've never heard of any dietary restrictions for a person due to having aortic stenosis. You should be able to exercise normally, but, of course, check with your doctor about that. Having said that, if he puts lots of exercise restrictions on you, get a second opinion. I can tell you that when I had moderate stenosis I continued to do all kinds of exercise, including Brazilian Jiu Jitsu, boxing, running, biking, hiking and more. You may be limited with respect to lifting heavy weights- just talk to your doctor. Now, aortic stenosis sometimes comes along with an aneurysm, especially if you have a bicuspid aortic valve. If you have an aneurysm, this could alter how hard you are allowed to exercise, depending on how big it is. When people have aortic stenosis in their 50s, it is most commonly caused by having a bicuspid aortic valve or having elevated Lp(a). It would be a good idea to get your Lp(a) tested- simple blood test. If you have a bicuspid aortic valve (BAV), you will be at higher risk for having an aneurysm.

I had my aortic valve surgery 42 months ago, along with getting my ascending aorta replaced with a dacron sleeve. I am very active, still doing all the sports that I did before surgery. I just finished a 4.6 mile hike with a 1,400 elevation gain today and feel great. I climb the mountain just like I use to before surgery.

Moderate aortic stenosis could mean that you are relatively close to surgery, or it could be many years away. It really depends on where it is in the moderate spectrum and how quickly it progresses. For some, it progresses slowly, some fast. When mine was discovered it was already pretty close to to the 'severe' threshold. It crossed into severe after 20 months and I got my surgery.

There are a lot of informative threads here. Take your time and read them. There are also a lot of folks who have been where you are at, so feel free to ask us any questions that you may have.

I want to underscore again that there is no reason why you can't live a totally normal life and continue to do the vast majority of things which you enjoy. The surgery probably has about a 99% success rate for someone your age. So, when that time comes, I am sure that you will do just fine. The fact that you are currently in the best physical shape of your life will only make surgery and recovery that much better. I would strongly encourage you to stay in shape, with your doctor's guidance of course, and go into surgery strong.

There is a lot of cumulative experience on this forum. Please feel free to ask any questions which you may have.

 

[skumpet]

Welcome to VR!

Sorry to hear about your diagnosis, but glad that you found us.


That is totally normal. I was close to your age when I was diagnosed with moderate aortic stenosis- 52. It can take awhile to adjust to your new reality. This forum helped me a great deal in this regard, and I expect it will for you as well. What you will learn is that life is very normal with aortic stenosis, there is a very successful cure for it- surgical valve replacement, and that life is very normal after surgery. It is hard to imagine that life would be normal after OHS, but it really is.


I've never heard of any dietary restrictions for a person due to having aortic stenosis. You should be able to exercise normally, but, of course, check with your doctor about that. Having said that, if he puts lots of exercise restrictions on you, get a second opinion. I can tell you that when I had moderate stenosis I continued to do all kinds of exercise, including Brazilian Jiu Jitsu, boxing, running, biking, hiking and more. You may be limited with respect to lifting heavy weights- just talk to your doctor. Now, aortic stenosis sometimes comes along with an aneurysm, especially if you have a bicuspid aortic valve. If you have an aneurysm, this could alter how hard you are allowed to exercise, depending on how big it is. When people have aortic stenosis in their 50s, it is most commonly caused by having a bicuspid aortic valve or having elevated Lp(a). It would be a good idea to get your Lp(a) tested- simple blood test. If you have a bicuspid aortic valve (BAV), you will be at higher risk for having an aneurysm.

I had my aortic valve surgery 42 months ago, along with getting my ascending aorta replaced with a dacron sleeve. I am very active, still doing all the sports that I did before surgery. I just finished a 4.6 mile hike with a 1,400 elevation gain today and feel great. I climb the mountain just like I use to before surgery.

Moderate aortic stenosis could mean that you are relatively close to surgery, or it could be many years away. It really depends on where it is in the moderate spectrum and how quickly it progresses. For some, it progresses slowly, some fast. When mine was discovered it was already pretty close to to the 'severe' threshold. It crossed into severe after 20 months and I got my surgery.

There are a lot of informative threads here. Take your time and read them. There are also a lot of folks who have been where you are at, so feel free to ask us any questions that you may have.

I want to underscore again that there is no reason why you can't live a totally normal life and continue to do the vast majority of things which you enjoy. The surgery probably has about a 99% success rate for someone your age. So, when that time comes, I am sure that you will do just fine. The fact that you are currently in the best physical shape of your life will only make surgery and recovery that much better. I would strongly encourage you to stay in shape, with your doctor's guidance of course, and go into surgery strong.

There is a lot of cumulative experience on this forum. Please feel free to ask any questions which you may have.

Thank you Chuck, I really appreciate your thoughtful reply. You’ve brought me some needed relief. I would have liked to have talked to a doctor today about my results but I’ll have to wait and then it will probably mean a referral to a cardiologist. So much waiting lol. Is it standard not to have the procedure until you start having symptoms? I’m the kind of person that wants to fix things now if possible. If medication can’t reverse or stop the progression why do they have you wait? Doesn’t that make a person feel like a ticking time bomb of sorts?

 

[Chuck C]

Hi.

Is it standard not to have the procedure until you start having symptoms?

Good question. The guidelines generally call for surgery once aortic stenosis becomes severe, with symptoms. However, there is growing evidence that it is better to get surgery before the onset of symptoms- a few published medical papers showing much better long term survival. As such, there seems to be a shift gradually happening, with more surgeons recommending surgery before symptoms. My surgeon was in that camp. I think that I am like you, in that I like to get things fixed and taken care of. When I became severe my cardiologist told me that I could get surgery now or wait for symptoms- basically that would likely mean just kicking the can down the road a few months if I waited. It was an easy decision for me to not wait for symptoms, especially after reading up on the long term better outcomes in not waiting. When I had my surgical consultation, I learned that my surgeon was strongly in the camp of not waiting for symptoms. In his words- my first symptom could be sudden death, so get it taken care of now would be ideal. So, we were both solidly on the same page in this regard, while my cardiologist did not have a strong opinion either way and just insisted that the choice was mine, preferring to not try to sway me either way.

I was not interested in getting repeat surgeries, so I opted for a mechanical valve, which most guidelines in the world recommend for patients under 60 years old. Young folks, in the heart valve world that means patients under 70, go through tissue valves faster than elderly folks. I was told that at age 53, I should expect about 10 years out of a tissue valve. That did not appeal to me at all, so I opted for mechanical, which is basically being one and done with the surgery. You will come across info out there claiming that you can't be physically active with a mechanical valve, as you are on warfarin, but that is nonsense. Those of us with mechanical valves live active lives- at least as active as we choose to be. So, since I was going mechanical, it really made no sense for me to wait for symptoms. Really nothing to gain other than to delay the inevitable. I was motivated to get it done, go into surgery as healthy as possible, and get on with my recovery.

But, you are moderate and, as I said previously, you might be months away from being severe, or you might be years away. There is not much point in getting surgery if your stenosis is just moderate and you might not be able to find a surgeon willing to operate this early.

You probably have a good amount of time to digest things and make the decisions that you will need to make. As I see it, the big decision for you will be to go mechanical or tissue. The next big decision, in my view, would be once you do become severe, do you get surgery soon or wait for symptoms. There are threads and many posts about the decision of whether to go mechanical or tissue. Take your time and read them. Ask questions. You almost certainly have months to take it all in and decide and you very well might have years.

Here is a thread that I posted back in 2021, when my aortic stenosis crossed the line into 'severe', in which I discuss the decision which I had to make- get surgery soon or wait. Obviously, you know which decision I made. I also posted to the thread during my stay in the hospital and my recovery from OHS.

https://www.valvereplacement.org/th...to-severe-and-need-to-make-a-decision.887879/

 

[dornole]

Chuck handled this so well but I will just add one thing - the progression of valve disease is not linear and it is important to intervene at the right time. So make sure you DO follow your care plan in terms of echos, appointments and any other tests. For many people this would just mean getting an echo annually and meeting with your cardiologist to review it, plus being proactive with an appointment if you notice symptoms. 22 years of moderate stenosis in my case. Your mileage may vary.

 

[skumpet]

Hi.


Good question. The guidelines generally call for surgery once aortic stenosis becomes severe, with symptoms. However, there is growing evidence that it is better to get surgery before the onset of symptoms- a few published medical papers showing much better long term survival. As such, there seems to be a shift gradually happening, with more surgeons recommending surgery before symptoms. My surgeon was in that camp. I think that I am like you, in that I like to get things fixed and taken care of. When I became severe my cardiologist told me that I could get surgery now or wait for symptoms- basically that would likely mean just kicking the can down the road a few months if I waited. It was an easy decision for me to not wait for symptoms, especially after reading up on the long term better outcomes in not waiting. When I had my surgical consultation, I learned that my surgeon was strongly in the camp of not waiting for symptoms. In his words- my first symptom could be sudden death, so get it taken care of now would be ideal. So, we were both solidly on the same page in this regard, while my cardiologist did not have a strong opinion either way and just insisted that the choice was mine, preferring to not try to sway me either way.

I was not interested in getting repeat surgeries, so I opted for a mechanical valve, which most guidelines in the world recommend for patients under 60 years old. Young folks, in the heart valve world that means patients under 70, go through tissue valves faster than elderly folks. I was told that at age 53, I should expect about 10 years out of a tissue valve. That did not appeal to me at all, so I opted for mechanical, which is basically being one and done with the surgery. You will come across info out there claiming that you can't be physically active with a mechanical valve, as you are on warfarin, but that is nonsense. Those of us with mechanical valves live active lives- at least as active as we choose to be. So, since I was going mechanical, it really made no sense for me to wait for symptoms. Really nothing to gain other than to delay the inevitable. I was motivated to get it done, go into surgery as healthy as possible, and get on with my recovery.

But, you are moderate and, as I said previously, you might be months away from being severe, or you might be years away. There is not much point in getting surgery if your stenosis is just moderate and you might not be able to find a surgeon willing to operate this early.

You probably have a good amount of time to digest things and make the decisions that you will need to make. As I see it, the big decision for you will be to go mechanical or tissue. The next big decision, in my view, would be once you do become severe, do you get surgery soon or wait for symptoms. There are threads and many posts about the decision of whether to go mechanical or tissue. Take your time and read them. Ask questions. You almost certainly have months to take it all in and decide and you very well might have years.

Here is a thread that I posted back in 2021, when my aortic stenosis crossed the line into 'severe', in which I discuss the decision which I had to make- get surgery soon or wait. Obviously, you know which decision I made. I also posted to the thread during my stay in the hospital and my recovery from OHS.

https://www.valvereplacement.org/th...to-severe-and-need-to-make-a-decision.887879/

Thanks again Chuck, your feedback has been invaluable. I'm currently reading that thread and it's been fascinating so far.

 

[skumpet]

Chuck handled this so well but I will just add one thing - the progression of valve disease is not linear and it is important to intervene at the right time. So make sure you DO follow your care plan in terms of echos, appointments and any other tests. For many people this would just mean getting an echo annually and meeting with your cardiologist to review it, plus being proactive with an appointment if you notice symptoms. 22 years of moderate stenosis in my case. Your mileage may vary.

Thank you for the reply. Are you saying you've had moderate stenosis for 22 years without symptoms or progression?

 

[Mister_James]

Hello,

I'm new to this board, I found it online when searching out information about moderate aortic stenosis which I was just diagnosed with today. I'm still feeling stunned, unsure of what I can or can't do now such as eating or exercising. I haven't felt any symptoms whatsoever, I actually feel like I'm in the best shape of my life at 54 years old. I've been training for a marathon and not sure if I can continue that or the chin-ups and push-ups I do every day. I've yet to meet with a doctor to discuss the results or plan of action but so far what I've read online hasn't eased my mind. I know looking online isn't the best thing to do and the email with the results even suggested waiting to review with my doctor before reading, but who's going to do that? Lol. Anyways, this looks like an informative and compassionate community and I hope to gain more knowledge and piece of mind as I read the many posts here. Thanks for reading.

Ha! Live life. Stenosis is stenosis...keep your bp in range and all you may have to do is monitor it. Things you can't fix, why worry about them?

 

[dornole]

Thank you for the reply. Are you saying you've had moderate stenosis for 22 years without symptoms or progression?

Let's say I had moderate stenosis for 21.5 years without symptoms or progression. Last 6 months have been increasing symptoms and tests, verified severe in August and headed to surgery most likely in October, pending scheduling.

You can't predict what's going to happen in any individual case but it is definitely possible to stay moderate for a long time.

 

[pellicle]

Good morning

lots of excellent answers and advice above.

On this point:

Thank you for the reply. Are you saying you've had moderate stenosis for 22 years without symptoms or progression?

I observe Dornole answered this but

this means that the progress of valvular degradation does not follow a linear process; it does not go from 1 to 2 to 3 ... it goes from 1 to 2 to 4 to 8 to "real bad" and it does so fast towards the end. A simplified example curve would look like this:

This is exactly why monitoring increases in frequency (how often you are checked) as we reach the inflection point. Keep in mind that the above curve is just an example of non-linear vs linear it does not reflect what you will experience.

There is a lot of emerging evidence suggesting "earlier surgery is better" and for a lot of good reasons.

From a recent reply here.

further to my above answer (I knew it was there, just had to search it), I strongly recommend you review this thread:​

​

https://www.valvereplacement.org/th...re-vs-waiting-for-symptoms.888781/post-920179​

and don't miss this post either​

https://www.valvereplacement.org/th...re-vs-waiting-for-symptoms.888781/post-920191​

Both of those contributors are high value contributors.​

Best Wishes

 

[pellicle]

Hi again (sorry, been a bit distracted this morning)

If medication can’t reverse or stop the progression why do they have you wait?

old ways of thinking ... (which I addressed above without making it clear that this is what I was adressing)

Doesn’t that make a person feel like a ticking time bomb of sorts?

we are all ticking time bombs ... the only thing that happens is at some time you realise this truth. If you are not using a computer to read these posts (and are using a phone) you won't see my signature line:

“We have two lives and the second begins when you realize you only have one.”​

​

Confucius (apparently)​

I've had a lot of brushes with death and sadly have reached an age when so many of those I've loved are now dead; so the "beginning of the second one" was probably between my first OHS (at 10yo) and my second OHS (at 28).

Knowing my mortality I've done the following things:

• not putting off to "one day" the things I'm interested in
• sorting out my relationships and removing people who are toxic in my life
• focusing on being happy
• learning
• helping others

Some words I've written on my blog (which I started back in 2008 so that I didn't have to write the same things over and over) about life and our sense of control over things.

https://cjeastwd.blogspot.com/2015/09/denial-or-delusion.html

Back on valve choices I recommend a careful and dutiful listen to the following. So many of the points you'll probably miss because so much is very "meta" for you now.

This presentation by Dr Schaff of the Mayo is probably the most pithy thing I've ever posted (and I post a lot)



a more current video by the same speaker


Then I strongly recommend this:

Bioprosthetic-Valve Thrombosis: Lessons From a Case Series
https://www.medscape.com/viewarticle/838221

Some more good thoughts here

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6306127/

(emphasis mine)

Degenerative valve disease is on the rise with greater than 100,000 valve operations performed in the US alone per year. The majority of those procedures employ tissue bioprostheses to avoid the attendant risk of anticoagulation, especially in the elderly. Though traditionally this approach has been considered a superior option to avoid anticoagulation, more recent analyses have demonstrated a significant incidence of previously unrecognized thrombosis associated with bioprosthetic valves, especially with the more recent advent of the transcatheter aortic valve replacement implantations. Bioprosthetic valve thrombosis is a major cause of either acute or indolent bioprosthetic valve degeneration, and often has an elusive presentation causing delayed recognition and treatment. The literature has extensively addressed the risks and benefits of anticoagulation following bioprosthetic valve replacement to prevent bioprosthetic valve thrombosis (BPVT), without conclusive evidence-based recommendations. The duration of anticoagulation following an episode of BPVT is unclear, and lifelong anticoagulation has been suggested. The increasing use of transcatheter aortic valve replacement as an alternative to surgical aortic valve replacement in various risk groups has introduced new challenges with regards to valve thrombosis, which have been poorly studied with regards to optimal treatment and prevention. The increasing use of valve-in-valve procedures is expected to bring on further uncharted challenges.​

There's a real lot of stuff in all of that but if you keep in mind:

1. how old am I
2. how long will X choice last
3. how much will successive surgeries leave me depleted and in need of recovery
4. what age will I be at redo surgery

I see that now you're 54 ... I'm 60. Here's a post I made when I was about 53

https://www.valvereplacement.org/threads/just-sharing-a-bit-of-beauty.872964/#post-873459

My surgery prior (OHS#3) was at 48. Do the maths for probable life spans of other choices then spin the wheel and roll the ball.

Best Wishes

 

[Croooser]

All good info here. When I asked about having surgery performed to put it behind me, my cardio drew a graph illustrating the risk of surgery vs the risks of allowing the disease to progress beyond the initial phase of serious.

Once you can see the metrics from your echo test, you will be able to know more. Generally, surgery is recommended when aortic valve area (AVA) goes smaller than 1.0 and/or the aortic aneurysm goes larger than 5.0. However, that càn vàry based on the individual and the Doctors.

FWIW, I was 18 years from initial diagnosis to surgery. YMMV.

The condition is very serious. However as Chuck has indicated, the success rate is very high. Surgery provides an extended high quality life for most of us.

Many here will tell you that educating yourself will significantly reduce the anxiety. This is a great place for some of that education, IMO.

 

[Timmay]

Chuck and pellicle in particular did a great job above addressing your situation. First - I want to extend a huge thank you to them for their tireless work here … and staying up to date with the literature.

Next, I just want to emphasize what they said above: You want to have surgery before you have symptoms. Once your heart starts remodeling/adjusting to the tiny aortic valve opening, there’s a chance your body will be making changes that it cannot recover from. Have surgery sooner rather than later. Think about it this way - you CANNOT avoid having surgery. It WILL happen. Kicking the can down the road does you no favors. It only sets you up for failure.

i had my surgery 28 months ago at 50 years old. I’m so young that opted for the good ol fashioned chest split open and a mechanical aortic valve installed. I had relatively no chest pain from this procedure. I was off all pain meds in 24 hours and went home in 4 days. I walked 2 miles 2 weeks after surgery … really slow of course.

 

[skumpet]

Good morning

lots of excellent answers and advice above.

On this point:



I observe Dornole answered this but

View attachment 890552

this means that the progress of valvular degradation does not follow a linear process; it does not go from 1 to 2 to 3 ... it goes from 1 to 2 to 4 to 8 to "real bad" and it does so fast towards the end. A simplified example curve would look like this:

View attachment 890553

This is exactly why monitoring increases in frequency (how often you are checked) as we reach the inflection point. Keep in mind that the above curve is just an example of non-linear vs linear it does not reflect what you will experience.

There is a lot of emerging evidence suggesting "earlier surgery is better" and for a lot of good reasons.

From a recent reply here.

further to my above answer (I knew it was there, just had to search it), I strongly recommend you review this thread:​

​

https://www.valvereplacement.org/th...re-vs-waiting-for-symptoms.888781/post-920179​

and don't miss this post either​

https://www.valvereplacement.org/th...re-vs-waiting-for-symptoms.888781/post-920191​

Both of those contributors are high value contributors.​

Best Wishes

Thank you very much Pellicle.

 

[skumpet]

Hi again (sorry, been a bit distracted this morning)


old ways of thinking ... (which I addressed above without making it clear that this is what I was adressing)


we are all ticking time bombs ... the only thing that happens is at some time you realise this truth. If you are not using a computer to read these posts (and are using a phone) you won't see my signature line:

“We have two lives and the second begins when you realize you only have one.”​

​

Confucius (apparently)​

I've had a lot of brushes with death and sadly have reached an age when so many of those I've loved are now dead; so the "beginning of the second one" was probably between my first OHS (at 10yo) and my second OHS (at 28).

Knowing my mortality I've done the following things:

• not putting off to "one day" the things I'm interested in
• sorting out my relationships and removing people who are toxic in my life
• focusing on being happy
• learning
• helping others

Some words I've written on my blog (which I started back in 2008 so that I didn't have to write the same things over and over) about life and our sense of control over things.

https://cjeastwd.blogspot.com/2015/09/denial-or-delusion.html

Back on valve choices I recommend a careful and dutiful listen to the following. So many of the points you'll probably miss because so much is very "meta" for you now.

This presentation by Dr Schaff of the Mayo is probably the most pithy thing I've ever posted (and I post a lot)



a more current video by the same speaker


Then I strongly recommend this:

Bioprosthetic-Valve Thrombosis: Lessons From a Case Series
https://www.medscape.com/viewarticle/838221

Some more good thoughts here

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6306127/

(emphasis mine)

Degenerative valve disease is on the rise with greater than 100,000 valve operations performed in the US alone per year. The majority of those procedures employ tissue bioprostheses to avoid the attendant risk of anticoagulation, especially in the elderly. Though traditionally this approach has been considered a superior option to avoid anticoagulation, more recent analyses have demonstrated a significant incidence of previously unrecognized thrombosis associated with bioprosthetic valves, especially with the more recent advent of the transcatheter aortic valve replacement implantations. Bioprosthetic valve thrombosis is a major cause of either acute or indolent bioprosthetic valve degeneration, and often has an elusive presentation causing delayed recognition and treatment. The literature has extensively addressed the risks and benefits of anticoagulation following bioprosthetic valve replacement to prevent bioprosthetic valve thrombosis (BPVT), without conclusive evidence-based recommendations. The duration of anticoagulation following an episode of BPVT is unclear, and lifelong anticoagulation has been suggested. The increasing use of transcatheter aortic valve replacement as an alternative to surgical aortic valve replacement in various risk groups has introduced new challenges with regards to valve thrombosis, which have been poorly studied with regards to optimal treatment and prevention. The increasing use of valve-in-valve procedures is expected to bring on further uncharted challenges.​

There's a real lot of stuff in all of that but if you keep in mind:

1. how old am I
2. how long will X choice last
3. how much will successive surgeries leave me depleted and in need of recovery
4. what age will I be at redo surgery

I see that now you're 54 ... I'm 60. Here's a post I made when I was about 53

https://www.valvereplacement.org/threads/just-sharing-a-bit-of-beauty.872964/#post-873459

My surgery prior (OHS#3) was at 48. Do the maths for probable life spans of other choices then spin the wheel and roll the ball.

Best Wishes

Thanks again Pellicle, I appreciate it.

 

[skumpet]

All good info here. When I asked about having surgery performed to put it behind me, my cardio drew a graph illustrating the risk of surgery vs the risks of allowing the disease to progress beyond the initial phase of serious.

Once you can see the metrics from your echo test, you will be able to know more. Generally, surgery is recommended when aortic valve area (AVA) goes smaller than 1.0 and/or the aortic aneurysm goes larger than 5.0. However, that càn vàry based on the individual and the Doctors.

FWIW, I was 18 years from initial diagnosis to surgery. YMMV.

The condition is very serious. However as Chuck has indicated, the success rate is very high. Surgery provides an extended high quality life for most of us.

Many here will tell you that educating yourself will significantly reduce the anxiety. This is a great place for some of that education, IMO.

I agree, thank you Croooser