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Survived03

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Hello all! Im a 62 yo male and back in 2003 I had an ascending aortic aneurysm surgically repaired together with a valve sparing repair of a bicuspid aortic valve. The BAV has lasted over 19 years but I'm closing in on the need for a aortic valve replacement due to aortic stenosis. I am happy with the path that we took in 2003 full well knowing that the day would come when I had to "pay the piper". My latest echo results have placed me in the category of planning for a new valve. I'm experiencing almost no real physical symptoms yet, maybe a little less energy exercising and requiring a longer warm-up period when doing so. I will be consulting with a surgeon soon. Given my age and physical condition I'm expecting OHS again. But I will wait to hear from the surgeons. I guess I now need to decide on mechanical vs bioprothesis. If, and big if, I could get away with a bio valve and later qualify for valve in valve TAVR I would consider this path. But again my expectations are that they will recommend mechanical. I appreciate the wealth of first hand information that I have found on this forum and hope to be able to provide my own experiences if they might help others.
 

pellicle

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Welcome aboard


good weekend.jpg
 

Chuck C

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Welcome to the forum!

If, and big if, I could get away with a bio valve and later qualify for valve in valve TAVR I would consider this path
The issue here is that there is no way for them to know now whether you will qualify for TAVR down the road. Once the tissue valve needs replacing, typically from SVD, you would then be evaluated to see if you are eligible for TAVR. One thing that it depends on is the distribution of the calcification. The Inspiris Resilia is designed to expand for a future TAVR down the road, but you would still need to be evaluated when the time comes. Even though I was not really considering TAVR, due to my age (53), my cardiologist wanted me to be evaluated for it, just so that we had the option on the table. They determined that I was not eligible, due to uneven distribution of calcification on my aortic leaflets.
 

skier

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The Inspiris Resilia is designed to expand for a future TAVR down the road, but you would still need to be evaluated when the time comes.
The Inspiris Resilia was presented as a viable option for me earlier this summer. Being 56, I chose mechanically and ended up with St. Jude. At 62, it would have been a more difficult choice.

As we discussed the Inspiris Resilia, it seemed it was almost certain to be able to take a TAVR down the road when needed. In addition to expanding, it is designed to be a solid base/foundation for the TAVR valve.

TAVR isn't an option for those of us with regurgitation, as there isn't a solid base in which to implant the TAVR valve. OHS with the Inspiris Resilia was presented as making this a no-issue for a future TAVR.

@Survived03, to help decide, I'd ask your surgeon what percentage of Inspiris Resilia are expected to be unable to take a future TAVR and why. I didn't get far enough down the biological valve route but would want to know if I was leaning in that direction.
 

pellicle

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As we discussed the Inspiris Resilia, it seemed it was almost certain to be able to take a TAVR down the road when needed
I'm not an expert in this specific question, but I've understood there is more to being "suitable" to a TAVR than just the foundation (or bedding) into which the transcatheter origami valve is inserted. I would totally ask your relevant specialist (be that cardiologist or surgeon) for hard data with a "it pertains to me specifically" slant on advice.
 

Survived03

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The Inspiris Resilia was presented as a viable option for me earlier this summer. Being 56, I chose mechanically and ended up with St. Jude. At 62, it would have been a more difficult choice.

As we discussed the Inspiris Resilia, it seemed it was almost certain to be able to take a TAVR down the road when needed. In addition to expanding, it is designed to be a solid base/foundation for the TAVR valve.

TAVR isn't an option for those of us with regurgitation, as there isn't a solid base in which to implant the TAVR valve. OHS with the Inspiris Resilia was presented as making this a no-issue for a future TAVR.

@Survived03, to help decide, I'd ask your surgeon what percentage of Inspiris Resilia are expected to be unable to take a future TAVR and why. I didn't get far enough down the biological valve route but would want to know if I was leaning in that direction.
Thank you for your valuable input.
 

Survived03

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I'm not an expert in this specific question, but I've understood there is more to being "suitable" to a TAVR than just the foundation (or bedding) into which the transcatheter origami valve is inserted. I would totally ask your relevant specialist (be that cardiologist or surgeon) for hard data with a "it pertains to me specifically" slant on advice.
This is exactly why I want hear about reimplementation into the Dacron “hose”. If perhaps there is a good foundation maybe they could go with large dia bio and have an opportunity for valve in valve TAVR later. My original surgeon is no longer performing surgery but I will be visiting his protege next week. Ironically he (new surgeon) assisted in my original surgery while in his Fellowship. So I guess he has already had his hands on my engine.
 

pellicle

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My original surgeon is no longer performing surgery but I will be visiting his protege next week. Ironically he (new surgeon) assisted in my original surgery while in his Fellowship. So I guess he has already had his hands on my engine.
interestingly that's exactly the position I was in in 2011, my surgeon from 1992 (and actually 1974) was retired and one of his registras (I believe) did my 3rd OHS in 2011. I found him well informed but brief of words. He had little time for explanations, but that didn't faze me because I know how to research a topic.

Do due dilligence on your information seeking and (if I may offer an opinion) tend towards conservative than "hopeful" or "prospective" plans.

You are indeed "all in" on your bet.

Best Wishes
 

Survived03

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interestingly that's exactly the position I was in in 2011, my surgeon from 1992 (and actually 1974) was retired and one of his registras (I believe) did my 3rd OHS in 2011. I found him well informed but brief of words. He had little time for explanations, but that didn't faze me because I know how to research a topic.

Do due dilligence on your information seeking and (if I may offer an opinion) tend towards conservative than "hopeful" or "prospective" plans.

You are indeed "all in" on your bet.

Best Wishes
I had a productive meet with a potential surgeon this week. Since I have a mean gradient of 48mmHg and very low symptoms he wants to take a wait and watch approach. Of course this will be up to me, my cardiologist and a second opinion from a different thoracic surgeon. Interestingly he brought up the idea of the Inspiris Risilia before I asked. He tells me that given the size of my Dacron aortic root ( subject to being modified or replaced if things look different once inside) and the high placement of my coronary artery anastomsis I would be a good candidate for IR valve and a valve in valve TAVR later. I’m comfortable with the assumptions based on my 3D CT and the measurements of my past aortic root replacement surgery. It is still something for me to consider. But I will obtain a second opinion as well continue my research regarding bioprosthesis or mechanical. The point that spooked me the most, and mentioned a couple times, is the complexity of going back into the chest. But I do realize that I have no choice and based on inputs from this blog, it is not uncommon and has good outcomes. All for now.
 

pellicle

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He tells me that given the size of my Dacron aortic root ( subject to being modified or replaced if things look different once inside) and the high placement of my coronary artery anastomsis I would be a good candidate for IR valve and a valve in valve TAVR later.
excellent ...
oh, and a minor point, this place isn't a blog, its a forum. I have a blog Binarly LOG (like ones personal log). This place isn't quite a blog.

all choices are non-ideal (poaching from something I wrote today)

My summary position is this: there is no definitive cure to valular heart disease, we simply exchange valvular heart disease for "prosthetic valve disease" each of the solutions is not ideal but are different in nature.

The answer of which of the non-ideal choices you face has a set of actual parameters (not perceived parameters) which are directly related to which you choose
  1. the mechanical valve is a reasonably permanent solution which all of the literature states (yes, even the pro Ross literature) has as its only drawback the requirement to manage AntiCoagulation Therapy. If you are actually contra-indicated then easy choice.
  2. all other valves have as their only advantage that you don't have to manage ACT but have the only drawback that you will certainly require reoperation eventually (unless you die first).
  3. The chances of dying first increase with age at operation.
So in essence its a simple equation which can be answered by one simple question: are you the type of person who will take that call to management seriously and do it?

If yes then the answer becomes simple, as it does if the answer is "no".

HTH
 

Chuck C

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Thanks for the update.

Since I have a mean gradient of 48mmHg and very low symptoms he wants to take a wait and watch approach.
Well, once you cross the 40mmHg threshold you have severe aortic stenosis. When I crossed into severe, like you, I had no symptoms. Like you, I had a choice to make. My surgeon strongly suggested I get surgery and not wait for symptoms. I'll quote him verbatim: "Your first symptom might be sudden death."

There are a couple papers which have been published on the outcomes comparing waiting for symptoms or getting surgery once AS is severe, without symptoms. The long term outcome for getting surgery before symptoms is much better, when compared against waiting for symptoms. From my perspective, I could not justify waiting. Likely I would gain a few months of time before surgery, but at the risk of irreversible structural harm to my heart or death.

So, I think that you are wise to get a second opinion, as you indicate that you are. And you are correct, ultimately it is your decision.

Please keep us posted.
 

Survived03

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Thanks for the update.


Well, once you cross the 40mmHg threshold you have severe aortic stenosis. When I crossed into severe, like you, I had no symptoms. Like you, I had a choice to make. My surgeon strongly suggested I get surgery and not wait for symptoms. I'll quote him verbatim: "Your first symptom might be sudden death."

There are a couple papers which have been published on the outcomes comparing waiting for symptoms or getting surgery once AS is severe, without symptoms. The long term outcome for getting surgery before symptoms is much better, when compared against waiting for symptoms. From my perspective, I could not justify waiting. Likely I would gain a few months of time before surgery, but at the risk of irreversible structural harm to my heart or death.

So, I think that you are wise to get a second opinion, as you indicate that you are. And you are correct, ultimately it is your decision.

Please keep us posted.
Chuck, I would like to know the name of the study and subsequent publications if you have them. My surgeon mentioned that everyone like to quote the South Korean study. Apparently there is another study in the works looking at similar outcomes. Unpublished at this time. Thanks in advance.
 

Survived03

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excellent ...
oh, and a minor point, this place isn't a blog, its a forum. I have a blog Binarly LOG (like ones personal log). This place isn't quite a blog.

all choices are non-ideal (poaching from something I wrote today)

My summary position is this: there is no definitive cure to valular heart disease, we simply exchange valvular heart disease for "prosthetic valve disease" each of the solutions is not ideal but are different in nature.

The answer of which of the non-ideal choices you face has a set of actual parameters (not perceived parameters) which are directly related to which you choose
  1. the mechanical valve is a reasonably permanent solution which all of the literature states (yes, even the pro Ross literature) has as its only drawback the requirement to manage AntiCoagulation Therapy. If you are actually contra-indicated then easy choice.
  2. all other valves have as their only advantage that you don't have to manage ACT but have the only drawback that you will certainly require reoperation eventually (unless you die first).
  3. The chances of dying first increase with age at operation.
So in essence its a simple equation which can be answered by one simple question: are you the type of person who will take that call to management seriously and do it?

If yes then the answer becomes simple, as it does if the answer is "no".

HTH
It’s an easy answer for me regarding testing, monitoring and dosing. I have a close background in diagnostic testing and pretty anal about all of my daily meds and an overload of supplements. But that’s me talking today. Will I have a similar capacity when I’m 75, 85, etc. who really knows. In addition I have been and will continue to be managing orthopedic issues. Mostly back and hips. This isn’t going away so now I have to factor in quality of life and future orthopedic surgeries. I mention QAL because pain management will be important. So you see, in my calculus, it’s not that simple of a decision. But hey, once the due diligence horse is beaten to death I will make a decision. Thanks
 

Survived03

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I just realized that I left out the strategy for watch and wait. This would be more frequent echos which can tell us the increase in stenosis as well as look for muscle change. Plus demonstration of symptoms.
 

pellicle

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I mention QAL because pain management will be important
not sure what QAL means but assume its Quality Of Life.
also not sure why management of pain meds will be exclusive of warfarin (which you may end up on no matter what your valve choice) as its simply managed (usually quite simply).

I often feel like "managed" is blown out of proportion in the minds of people who have never done it (rather like millennials or younger) arguing about the difficulties involved in managing a manual transmission car.
 

Chuck C

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Chuck, I would like to know the name of the study and subsequent publications if you have them. My surgeon mentioned that everyone like to quote the South Korean study. Apparently there is another study in the works looking at similar outcomes. Unpublished at this time. Thanks in advance.

You might have a read of this review. It references several studies.

"A prospective trial in patients with severe aortic stenosis found that mortality rates were significantly lower in those who underwent surgery early than in those who received conventional treatment, ie, watchful waiting (no specific medical treatment for aortic stenosis is available).15"


You might also have a read of this link as well:

"The researchers found that 2 years after the recommended approach, survival in the AVR group was 92.5% compared to 83.9% in the WW group."

 
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Survived03

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not sure what QAL means but assume its Quality Of Life.
also not sure why management of pain meds will be exclusive of warfarin (which you may end up on no matter what your valve choice) as its simply managed (usually quite simply).

I often feel like "managed" is blown out of proportion in the minds of people who have never done it (rather like millennials or younger) arguing about the difficulties involved in managing a manual transmission car.
Managed, in the context of my reply is related to treatment, pain management and future surgery. In MY situation. Yes, QAL is quality of life. And I do realize that warfarin can be managed during long term pain med treatment. Just another external factor that has to be accounted for while maintaining a persons INR goal.

I often see responses about future need for anticoagulants. That may be true but I get the feeling the responses here are only related to warfarin and not other Tx such as Apixaban which do not require INR’s and titrations. Secondly, there are more anti coagulants under development. Thirdly, if Tx is required due to A fib or flutter there are procedures for correcting that ailment. For example, ablation and Watchman.

I also hope that the arrival of new compounds would benefit all people currently on warfarin. I have no insight on availability by the way.
 
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