Introduction

[CAG12345]

62F after first echo showing moderate to severe aortic stenosis, asymptomatic. On watchful waiting for next six months unless symptoms appear, then another echo. Have been really scared of dying, of surgery and if pain and long term complications/recovery and losing control over my life. At this point only feeling open to TAVR procedure. Doing alot of research and looking for others' experiences. Don't have a big support system, a couple of good friends locally (but super busy lives) and one long distance. Thanks, everyone.

 

[dick0236]

Hi GAG12345.....and welcome. Read thru the posts on this Forum and you will find many others who have felt as you do.........and have gone on to live long, productive lives. Ask any questions you have and you will receive answers from many who have had that same question.

 

[CAG12345]

Hi GAG12345.....and welcome. Read thru the posts on this Forum and you will find many others who have felt as you do.........and have gone on to live long, productive lives. Ask any questions you have and you will receive answers from many who have had that same question.

Thank you for your warm and encouraging welcome.

 

[pellicle]

Hi and welcome

Have been really scared of dying, of surgery and if pain and long term complications/recovery and losing control over my life.

I understand ... but my only advice is: there is only one thing you truly have control over; which is how you choose to respond to something. The rest will unfold as the universe of probability driven everythings does. Of that you have no choice.

The real change here is probably that now that you are confronted by something you have no control over, you feel stripped of control. In reality you never had much control, and the rest was a sort of illusion/delusion.

Some views of what I've said, said another way

something from my personal experience which I hope clarifies why I'm solidly in this place

At this point only feeling open to TAVR procedure. Doing alot of research and looking for others' experiences.

I guess it depends on two things:

1. how healthy and fit you are
2. how long you expect to live for

So, in brief TAVR is the way to go if:

• you have solid reasons for believing that you won't live past 9 years from now
• you are very frail
• Doctors are telling you you are not a candidate for OHS (note: this does not mean some psychopath is saying to you "you can have the easy way out with TAVR if you want it")

TAVR is not the way to go if:

• you are healthy
• you see no reason why you'd not live to 90 (friend of mines mother in law just had her 90th and is still walking / bus / train everywhere, and I saw many many grandmothers still riding bicycles to the shop in Japan when I lived there)

This is because the valves do not last longer than OHS (even bio-prosthesis) and really make the next valve replacement very hard (last thing you want at 70 is a very hard surgery)

I would take the time to review everything I wrote here (link) to Caroline. Further I'd suggest you take the time to patiently listen to and digest the following presentations by Dr Schaff of the Mayo



and a more current video


I think more than warfarin etc. This is the main issue of the valve replacement.

Lastly let me say that valvular heart disease has no cure, but all the options available have pros and cons; we exchange valvular heart disease for prosthetic valve dis-ease and we need to understand that there are managements required for all options

• OHS with mechanical valve the management option is anticoagulation therapy, most will get a lifetime on a mechanical valve. You take a pill, you manage your INR.
• OHS with bioprosthesis you don't do anything, you let them do everything. They monitor, they check they decide when the time is right for surgery #2 ... because with a bioprosthesis surgery #2 is approaching a statistical certainty at 20 years (pretty poor timing for a 62yo)
• with TAVR its the same as bio-prosthesis except shorter duration and the (emphasis) possibility of valve in valve. Valve in Valve means the hole gets smaller and you begin "post intervention" with stenosis already. The Valve in Valve therefore lasts less time.

I munged this picture up to show you what I mean using a bioprosthetic valve placed inside another. This is not exactly what a TAVR valve looks like, but its more a visual metaphor to explain a principle.

its also wise to remember "you may not be a candidate for later Valve in Valve ...

Best Wishes

 

[CAG12345]

Hi and welcome


I understand ... but my only advice is: there is only one thing you truly have control over; which is how you choose to respond to something. The rest will unfold as the universe of probability driven everythings does. Of that you have no choice.

The real change here is probably that now that you are confronted by something you have no control over, you feel stripped of control. In reality you never had much control, and the rest was a sort of illusion/delusion.

Some views of what I've said, said another way

View attachment 890448

View attachment 890449

something from my personal experience which I hope clarifies why I'm solidly in this place




I guess it depends on two things:

1. how healthy and fit you are
2. how long you expect to live for

So, in brief TAVR is the way to go if:

• you have solid reasons for believing that you won't live past 9 years from now
• you are very frail
• Doctors are telling you you are not a candidate for OHS (note: this does not mean some psychopath is saying to you "you can have the easy way out with TAVR if you want it")

TAVR is not the way to go if:

• you are healthy
• you see no reason why you'd not live to 90 (friend of mines mother in law just had her 90th and is still walking / bus / train everywhere, and I saw many many grandmothers still riding bicycles to the shop in Japan when I lived there)

This is because the valves do not last longer than OHS (even bio-prosthesis) and really make the next valve replacement very hard (last thing you want at 70 is a very hard surgery)

I would take the time to review everything I wrote here (link) to Caroline. Further I'd suggest you take the time to patiently listen to and digest the following presentations by Dr Schaff of the Mayo



and a more current video


I think more than warfarin etc. This is the main issue of the valve replacement.

Lastly let me say that valvular heart disease has no cure, but all the options available have pros and cons; we exchange valvular heart disease for prosthetic valve dis-ease and we need to understand that there are managements required for all options

• OHS with mechanical valve the management option is anticoagulation therapy, most will get a lifetime on a mechanical valve. You take a pill, you manage your INR.
• OHS with bioprosthesis you don't do anything, you let them do everything. They monitor, they check they decide when the time is right for surgery #2 ... because with a bioprosthesis surgery #2 is approaching a statistical certainty at 20 years (pretty poor timing for a 62yo)
• with TAVR its the same as bio-prosthesis except shorter duration and the (emphasis) possibility of valve in valve. Valve in Valve means the hole gets smaller and you begin "post intervention" with stenosis already. The Valve in Valve therefore lasts less time.

I munged this picture up to show you what I mean with a bioprosthetic valve placed inside anoterer
View attachment 890450

Best Wishes

Thank you very much for your multi-pronged and super thorough response. I really appreciate all the information as well as help with the philosophical challenges.

 

[dornole]

You might be jumping the gun picking out / ruling out procedures. For perspective, I have had moderate to severe mitral stenosis and mitral regurgitation for more than 20 years now. Having echos every 6-12 months is prudent, not a death sentence. Although no one can guarantee your health, realistically speaking your most likely outcomes are:

1. Continued watchful waiting with echos. Def get those echos!! Possibly YEARS of echos. Valve disease isn’t a straight line progression at all. They just need to check for asymptomatic changes that warrant proceeding to surgery.

2. You need valve replacement, a highly successful surgery that you will likely recover from after some unpleasantness and then continue to have a good quality of life.

Is it a walk in the park, no, but we have lifesaving options available to us and that is truly incredible. 100 years ago everyone on this board would be toast. Instead, look at us, all alive n stuff. You’ll benefit from these medical options too.

 

[pellicle]

Thank you very much for your multi-pronged and super thorough response. I really appreciate all the information as well as help with the philosophical challenges

totally welcome ... to be clear my example of how valve in valve goes is not 100% engineeringly correct, but it is done to show that you can't put something inside something without making a reduction in orifice area. I'll go ammend that to make my point clearer for other readers.

The great thing about being a participant here is you get to see lots of other view points. In my view the most important thing is to "not trust the writer". Instead look at the arguments, see if they are correct and or applicable, check the data supports that assertion.

I do this with every journal article I read.

 

[3mm]

62F after first echo showing moderate to severe aortic stenosis, asymptomatic. On watchful waiting for next six months unless symptoms appear, then another echo.

I am sorry to hear about your condition, but, as others have already said, there are alternatives depending on your health, your approach to life, and how your condition changes. You control how you respond to your heart conditions!

I want to strongly urge you to carefully monitor your own health and stay in close contact with your cardiologist. A person can feel fine and be asymtomatic but still be damaging their heart. Please stay in contact with your cardiologist!

1 year ago I was mostly asymptomatic. I knew I had aortic regurgitation together with damage to my mitral valve from endocarditis. However, last summer I could still do 10 clean chinups and 80 clean pushups as part of an 1 hour workout of biking, steps, martial arts, and weight lifting. In August my cardiologist said I was showing signs of damage to my heart, so he strongly recommended surgery. Fortunately, I followed his recommendation and had surgery in 11 months ago. Mine was open heart surgery for mitral valve repair and installation of a mechanical On-X aortic valve. It has been hard work, but life is wonderful!

 

[ValveAdmin]

Welcome to the forum!

 

[macdaddy]

I just went through the scenario you're describing, and I can tell you that it IS scary, but it doesn't have to be. I was all set for the TAVR, did a ton of research, then at the eleventh hour, my cardiac surgeon informed me I had a bicuspid valve and historically, the TAVR doesn't always seat well in a bicuspid valve, leading to a minor amount of leakage. He also said that at my age (72), I could outlive the TAVR and a valve in valve (in the case of the TAVR) may be too restrictive and reduce my function. I'm in pretty good shape, still work 55-60 hours/wk, and he suggested I look at the Mini-AVR.

They don't have to crack the sternum, they go in between the ribs, and the studies I read stated this actually gives the surgeon a better angle to the aorta valve. Plus, the data on the biological valve shows 10+ years, and it's a much better recipient for a valve in valve down the road. It's larger, and makes a great seat for the TAVR should that day come. I had my mini on June 26th, it's not as sexy as the TAVR (you know, in and out in a day), but it also wasn't horrible either. I'm up to a mile a day at 2 miles per hour. I still get tired, most likely still shaking off the anesthesia from 4.5 hour.... but every day gets better.

I too was asymptomatic, so to say I feel better than before the procedure would be inaccurate...BUT...you don't want to wait to become symptomatic either. I waited a year from the date they called me severe, but it was because I had to get insurance settled in. I'm happy with my choice, because I'm optimistic I'll be around long enough to need a 2nd valve, and I'll have a perfect place to put it when the time comes.

I've learned a tone in here, so take others advice and read, read, read, and ask questions and do your own research. Everyone in here want to help...and that's really cool. You'll be fine!!!

 

[CAG12345]

You might be jumping the gun picking out / ruling out procedures. For perspective, I have had moderate to severe mitral stenosis and mitral regurgitation for more than 20 years now. Having echos every 6-12 months is prudent, not a death sentence. Although no one can guarantee your health, realistically speaking your most likely outcomes are:

1. Continued watchful waiting with echos. Def get those echos!! Possibly YEARS of echos. Valve disease isn’t a straight line progression at all. They just need to check for asymptomatic changes that warrant proceeding to surgery.

2. You need valve replacement, a highly successful surgery that you will likely recover from after some unpleasantness and then continue to have a good quality of life.

Is it a walk in the park, no, but we have lifesaving options available to us and that is truly incredible. 100 years ago everyone on this board would be toast. Instead, look at us, all alive n stuff. You’ll benefit from these medical options too.

Thank you!