coming up on AVR #2...

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Chris

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Jul 19, 2011
Messages
50
Location
Los Angeles, CA
Hi Folks,

I'm not sure how to start, but I will say that the people on this forum are wonderful. It's difficult for me to articulate what it's like to read everyone's thoughts and posts, but thanks.

That being said, I'm coming on on another valve replacement. I had my aortic valve replaced in 11/2011 (I was 41 y.o.) with a 21mm Carpentier-Edwards Magna valve (3000TFX). Life with it has been great, but I've stenosis and it's time for a replacement.

The medical group I go to seems to churn through cardiologists with some regularity. I've had four different ones in the eight years we've been here in Los Angeles. The doctor that I saw for my most recent echo (two weeks ago) was new to me at that visit. My AVA was 0.8cm2 and my peak post-valve velocity was 4.95m/s2. That was up from 3.8m/s2 in May of 2018.

He is recommending a valve-in-valve TAVR. I've an appointment with a surgeon on May 7th, who, my cardiologist thinks, will recommend the same thing. He explained his thinking as the TAVR will buy me X number of years before I have a second OHS, when I'll be older (I'm 49 now), and maybe they'll need to do some other work in there (bypass?). Aside from the valve, I am in good shape. 5'9" 160# and no other health issues. I cycle a lot, hike, and rock climb. Although I've laid off the cycling/heavy cardio since last Fall when I began to suspect my valve was really beginning to go downhill.

My current plan is to see the surgeon on the 7th of May and then see about seeing a different one for a second opinion. Since my current valve is 21mm, I wonder what size valve they'll be able to use with the TAVR. Same size (at best), or smaller, I imagine. I'd think that either way, considering my age and activity level, that valve isn't going to last me more than five or six years.
Part of me wonders if I should just have the second OHS now and get a mechanical valve so that I'm 'done' with this. I'd suppose that a mechanical would potentially last me thirty or fourty years (?), if nothing else gets me first.

If you've read this far, I thank you and would be happy to hear any and all thoughts you might have.

(Edit) And Pellicle, I've done a little reading on your blog followed a link from a different thread). Great stuff to chew on. Thanks for providing that.
 

Keithl

Well-known member
Joined
Apr 20, 2019
Messages
180
I would find another doctor, as to why, him think you may need a other OHS when the TAVR values is a long odds bet. My team did extensive tests including a coronary cath and told me my coronary arties like a
Squeaky clean and I will unlikely ever need bypass surgery, besides bypass a can be minimally invasion by just spreading 2 ribs vs. cracking your chest.

Also my surgeon when he opened me us said my valve was worse then images led them to believe with calcification that he was able to remove. He told my wife he does not se me needing another OHS for over 30 years I will be 88 at which point I may be dead by then.

TAVR have only been in the US for about 10 years (and Europe only a few years longer) so there are no broad based stats on what to expect from them.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
6,164
Location
Queensland, OzTrayLeeYa
Hi Chris
That being said, I'm coming on on another valve replacement. I had my aortic valve replaced in 11/2011 (I was 41 y.o.) with a 21mm Carpentier-Edwards Magna valve (3000TFX). Life with it has been great, but I've stenosis and it's time for a replacement.
it has been as you (quite probably) expected, and as the existing data would suggest:
  • younger folks get less duration from a bioprosthesis
  • smaller diameter valves stenose faster
  • you would need a reoperation
The medical group I go to seems to churn through cardiologists with some regularity.
I've had a similar experience with them and GP's (thats what we call regular doctors in Australia) and somehow this seems an alien factor to the surgeons. However on the positive side it does give you the opportunity to try a few and when you find one you like you can then look them up and perhaps follow them rather than stay at the same clinic.


He is recommending a valve-in-valve TAVR. I've an appointment with a surgeon on May 7th, who, my cardiologist thinks, will recommend the same thing. He explained his thinking as the TAVR will buy me X number of years before I have a second OHS, when I'll be older (I'm 49 now)
that's exactly right, what you don't know is how large is X. Given your active situation and given your under mean (average) duration with your tissue prosthetic I submit that its rational to expect that X will be at the lower end of what they are saying.

You will have to undergo the physical depreciations which are concomitant with stenosis a few more times (and trust me as you age you will discover "bouncing back" harder) and for what? Being able to kick the can down the road one more time? Ask yourself "what can and why are you kicking it?"

You are nearly 50, so if you were to get a bioprostheses now it would in all likelyhood last you about 15 years (perhaps less).

Just how many AVR's do you want to expose yourself to? Read also the thread on cognitive losses. As well as this you expose yourself each time to an enlarged risk of post surgical infections (I speak from direct experience there) which can devastate you for years after surgery (prolonging your recovery and reducing the fitness levels you can re-attain).

Further each subsequent redo operation becomes more complex (read longer) and while I've read here that people oooh and ahhh about the duration of their surgeries, my last one was nearly 13 hours, due to the complexity of the surgery from the perspective of 2 prior sugeries worth of scar tissue (and please do read up on scar tissue, its not just the thing you see on the outside).

May I ask your aversion to a mechanical is at this point? I understand it when you were 25 or 35, but at 50?


My current plan is to see the surgeon on the 7th of May and then see about seeing a different one for a second opinion. Since my current valve is 21mm,
I would put forward these questions and do not accept brush off answers
  1. given my reduced duration of service life of the bioprosthesis which I had what is your revised estimate (incorporating that data) into the expected duration of a TAVR placed prosthesis (and my understanding is 5~7 years in the existing cohort of inactive sedentary elderly frail people).
  2. given my small orifice size (21mm) will this influence the rate of calcification to bring me to stenosis faster (with it concomitant inclusion of calcification)
  3. what do you see as the reasons I should go against the surgical guidelines which suggest a bioprosthesis be mainly considered for patients over 65?
Part of me wonders if I should just have the second OHS now and get a mechanical valve so that I'm 'done' with this. I'd suppose that a mechanical would potentially last me thirty or fourty years (?), if nothing else gets me first.
its a good ponder and I would say that unless you fail regularly your AC therapy that without pannus obstruction possibility that the modern bi-leaflet valves will have a durablity in excess of the 40 years you mention. I say this because Structural Valve Degredation (SVD) does not occur with the modern pyrolytic carbon bileaflet valves. Dick here has had 50 years out of his old style Bjork Shelly.


(Edit) And Pellicle, I've done a little reading on your blog followed a link from a different thread). Great stuff to chew on. Thanks for providing that.
you're welcome. As one who has been part of some wonderful ground breaking work here in Australia I am always grateful to what my Government provided me (a great opportunity for a long and a full life), as here in Australia such surgeries are covered by our universal free health care.

For instance (apart from my living overseas for so many years) yesterday I went walking with one of my mates, we covered 20km in 6 hours though terrain like this:

DSCN3547.jpg


to get to a rocky outcropping top just left out of picture which is this one

DSCN3575.jpg


Andy my walking partner for the day is 10 years younger than me and has of course not had a lifetime of OHS's either

andrew.jpg


He had to wait a few times while my HR went down (from the steep climb up the side) and I could keep going. All in all a "normal day" for a fat old bastard like me.

As always, message me if you wish to chat about things by voice (its often easier than typing).

Best Wishes
 
Last edited:

jlcsn2015

Active member
Joined
Sep 21, 2015
Messages
28
Location
Toronto
Hi Folks,
If you've read this far, I thank you and would be happy to hear any and all thoughts you might have.

Hi !, we all have different thoughts and preferences , and there are no wrong choices, just differences of opinion, that said:

I was 63 when my BAV just gave up on me and i was dropping dead just for going for a short walk,
my cardiologist suggestion was to go "tissue" and then get a Valve -in - Valve TAVI when the valve gave up..

I spent long hours here reading, and had a couple exchanges with Pellilce, (to whom i am thankfull for his time and efforts here, ), and this what i told myself:

-I have a life ending condition if i dont do the surgery, so surgery can no bypass,
-No matter what i choose, my life will never be the same, since the surgery is not a
'back to normal' but a fix to a problem
- Any valve can fail, BUT, if i went tissue 100% for sure i will have to do it all over again
- There is no 100% certainty that TAVI can be used
- Warfarin is a pill, like many others we take
- Even if you get a tissue valve is not 100% that you will never ever have to use Warfarin

So, for me, having a second OHS with its family stress, recovery process and the pass of time,
that makes us older every minute, i decided to choose a mechanical valve 4 years ago now

My valve is a On-X and my INR is kept at around 2.2 ( On-X says 1.5-2) but, my goal is minimum 2 , desired 2.2, i hear noise "sometimes" in certain positions while sleep but lately i dont hear it,

I self test at home with a machine during the winter, and go to the lab during warm times,

The end, is that for me the most important point to consider was not going again trough this thing, and that is why my mechanical decision , also, the tissue is 100% chance that needs to be replaced unless you are on your 70s

But there are no wrong choices , nor decisions, what i did was what gave me peace of mind, for other people taking Warfarin is a big issue, but i recommend they read Pellicle's many articles about it

Just a thought
 

Marguerite53

Premium Level User
Joined
May 18, 2004
Messages
3,636
Location
Oregon
Hello. I am currently 20 months into my second tissue valve. Stenotic native bicuspid aortic replaced with bovine tissue 2006, age 52. Then at age 63, that valve somewhat disintegrated suddenly (valve "flail" where one valve stuck itself open and caused severe regurgitation). The recent 2-3 year echo prognosis for repeat AVR proved false as the valve actually failed due to my stenosis build-up. I got myself to ER since out-of-breath symptoms were strong. Good on me! Saved my life. Surgeon recommended same, updated tissue valve which I had been very happy with so that's what I got.
First OHS was text book. Second OHS was textbook until I went into aFib on day 7 of recovery. Resolved with a cardioversion then went into Atrial flutter. Stayed in hospital 5 more days, sent home on Amioderone and warfarin. Please know that between those two OHS events I had a retinal occlusion (embolic stroke to the retina of one eye leaving that eye permanently black blind) and subsequent carotid surgery which was part of the reason they kept me on warfarin for 6 months after second OHS.
Now that I am over a year beyond the event and going great I do wonder what I'll choose the 3rd time around. We'll see if the newer "treated" valve lasts longer. I did walk away from this one feeling less certain about everything, to be honest. Rattled me a bit. Not sure, still, if I could handle a mechanical with all its (presumed?) constraints and noises (I'm extremely sound sensitive). I absolutely hated being on warfarin.
Please do get a second opinion -- and a third if you need it! Informed decisions are best and everyone has their own physical peculiarities of structure, need and lifestyle.
Good luck and keep posting!
 

Chris

Well-known member
Joined
Jul 19, 2011
Messages
50
Location
Los Angeles, CA
Hi Chris


it has been as you (quite probably) expected, and as the existing data would suggest:
  • younger folks get less duration from a bioprosthesis
  • smaller diameter valves stenose faster
  • you would need a reoperation
Yes, I'd suppose that a TAVR, at this point, will not buy me too many more years before I need to have another OHS. 8-1/2 years from the first one makes me think that a TAVR would only get me five or six more years, from this point.


I've had a similar experience with them and GP's (thats what we call regular doctors in Australia) and somehow this seems an alien factor to the surgeons. However on the positive side it does give you the opportunity to try a few and when you find one you like you can then look them up and perhaps follow them rather than stay at the same clinic.




that's exactly right, what you don't know is how large is X. Given your active situation and given your under mean (average) duration with your tissue prosthetic I submit that its rational to expect that X will be at the lower end of what they are saying.

Exactly what I'm thinking.

You will have to undergo the physical depreciations which are concomitant with stenosis a few more times (and trust me as you age you will discover "bouncing back" harder) and for what? Being able to kick the can down the road one more time? Ask yourself "what can and why are you kicking it?"

Yup. That's certainly one of the questions rolling around in my head right now.

You are nearly 50, so if you were to get a bioprostheses now it would in all likelyhood last you about 15 years (perhaps less).

Considering I got less than nine years out of the first one, I wouldn't think a TAVR would get me more than five or six.

Just how many AVR's do you want to expose yourself to? Read also the thread on cognitive losses. As well as this you expose yourself each time to an enlarged risk of post surgical infections (I speak from direct experience there) which can devastate you for years after surgery (prolonging your recovery and reducing the fitness levels you can re-attain).

Right. I'd like to have as few valve replacements as possible, ideally, for the above-mentioned reasons. The only reasons, at this moment in time, that I'd consider another tissue valve would be the idea that I 'save' a second (and almost certainly final) OHS for later on in my life, in case they'd need to go in there for anything else.
I think having my coronary arteries checked to get some idea of their general condition now, so that a projection into the future might be made, would be prudent.
I'd think they're in good shape at this point.

Further each subsequent redo operation becomes more complex (read longer) and while I've read here that people oooh and ahhh about the duration of their surgeries, my last one was nearly 13 hours, due to the complexity of the surgery from the perspective of 2 prior sugeries worth of scar tissue (and please do read up on scar tissue, its not just the thing you see on the outside).

May I ask your aversion to a mechanical is at this point? I understand it when you were 25 or 35, but at 50?

My aversion stems from the blood thinners. That's my only issue. I like to hike, cycle, and rock climb and the rock climbing (my absolute favorite activity) is the one that gives me pause.

You have to click on the hotlink at the bottom of this photo, but this first one is a video.

[/url]neSloperProblem by Chris Burton, on Flickr


WindyCynProfile by Chris Burton, on Flickr


WindyCynSelfie by Chris Burton, on Flickr


I would put forward these questions and do not accept brush off answers
  1. given my reduced duration of service life of the bioprosthesis which I had what is your revised estimate (incorporating that data) into the expected duration of a TAVR placed prosthesis (and my understanding is 5~7 years in the existing cohort of inactive sedentary elderly frail people).
  2. given my small orifice size (21mm) will this influence the rate of calcification to bring me to stenosis faster (with it concomitant inclusion of calcification)
  3. what do you see as the reasons I should go against the surgical guidelines which suggest a bioprosthesis be mainly considered for patients over 65?
All good questions and they're already on my list. I'm going to have a very long list of things to discuss with the surgeon(s).

its a good ponder and I would say that unless you fail regularly your AC therapy that without pannus obstruction possibility that the modern bi-leaflet valves will have a durablity in excess of the 40 years you mention. I say this because Structural Valve Degredation (SVD) does not occur with the modern pyrolytic carbon bileaflet valves. Dick here has had 50 years out of his old style Bjork Shelly.

What's AC therapy / pannus obstruction?


you're welcome. As one who has been part of some wonderful ground breaking work here in Australia I am always grateful to what my Government provided me (a great opportunity for a long and a full life), as here in Australia such surgeries are covered by our universal free health care.

For instance (apart from my living overseas for so many years) yesterday I went walking with one of my mates, we covered 20km in 6 hours though terrain like this:



to get to a rocky outcropping top just left out of picture which is this one



Andy my walking partner for the day is 10 years younger than me and has of course not had a lifetime of OHS's either



He had to wait a few times while my HR went down (from the steep climb up the side) and I could keep going. All in all a "normal day" for a fat old bastard like me.

I snipped your photos for the sake of thread size, but thanks for posting them. They look like exactly the places I am drawn to.

As always, message me if you wish to chat about things by voice (its often easier than typing).

Best Wishes

Thank you.
 
Last edited:

Chris

Well-known member
Joined
Jul 19, 2011
Messages
50
Location
Los Angeles, CA
Hi, your bio mentions nothing regarding an aneurysm

There is the possibility of one, it's worth factoring this into the equation for potential
future surgery.

I hope this never happens but it's worth a thought

The more OHS the trickier it becomes

All the best

Thanks leadville. Could you elaborate on your thought about an aneurysm? I don't believe I have one.
 

Chris

Well-known member
Joined
Jul 19, 2011
Messages
50
Location
Los Angeles, CA
Hi Folks,
If you've read this far, I thank you and would be happy to hear any and all thoughts you might have.

Hi !, we all have different thoughts and preferences , and there are no wrong choices, just differences of opinion, that said:

I was 63 when my BAV just gave up on me and i was dropping dead just for going for a short walk,
my cardiologist suggestion was to go "tissue" and then get a Valve -in - Valve TAVI when the valve gave up..

I spent long hours here reading, and had a couple exchanges with Pellilce, (to whom i am thankfull for his time and efforts here, ), and this what i told myself:

-I have a life ending condition if i dont do the surgery, so surgery can no bypass,
-No matter what i choose, my life will never be the same, since the surgery is not a
'back to normal' but a fix to a problem
- Any valve can fail, BUT, if i went tissue 100% for sure i will have to do it all over again
- There is no 100% certainty that TAVI can be used
- Warfarin is a pill, like many others we take
- Even if you get a tissue valve is not 100% that you will never ever have to use Warfarin

So, for me, having a second OHS with its family stress, recovery process and the pass of time,
that makes us older every minute, i decided to choose a mechanical valve 4 years ago now

My valve is a On-X and my INR is kept at around 2.2 ( On-X says 1.5-2) but, my goal is minimum 2 , desired 2.2, i hear noise "sometimes" in certain positions while sleep but lately i dont hear it,

I self test at home with a machine during the winter, and go to the lab during warm times,

The end, is that for me the most important point to consider was not going again trough this thing, and that is why my mechanical decision , also, the tissue is 100% chance that needs to be replaced unless you are on your 70s

But there are no wrong choices , nor decisions, what i did was what gave me peace of mind, for other people taking Warfarin is a big issue, but i recommend they read Pellicle's many articles about it

Just a thought
Thanks for your thoughts. I'm on board with all of that with the exception of the wafarin. Being on a blood thinner concerns me considering my activity level. If it weren't for that, I'd probably go straight for a mechanical at this point.
 

Chris

Well-known member
Joined
Jul 19, 2011
Messages
50
Location
Los Angeles, CA
Hello. I am currently 20 months into my second tissue valve. Stenotic native bicuspid aortic replaced with bovine tissue 2006, age 52. Then at age 63, that valve somewhat disintegrated suddenly (valve "flail" where one valve stuck itself open and caused severe regurgitation). The recent 2-3 year echo prognosis for repeat AVR proved false as the valve actually failed due to my stenosis build-up. I got myself to ER since out-of-breath symptoms were strong. Good on me! Saved my life. Surgeon recommended same, updated tissue valve which I had been very happy with so that's what I got.
First OHS was text book. Second OHS was textbook until I went into aFib on day 7 of recovery. Resolved with a cardioversion then went into Atrial flutter. Stayed in hospital 5 more days, sent home on Amioderone and warfarin. Please know that between those two OHS events I had a retinal occlusion (embolic stroke to the retina of one eye leaving that eye permanently black blind) and subsequent carotid surgery which was part of the reason they kept me on warfarin for 6 months after second OHS.
Now that I am over a year beyond the event and going great I do wonder what I'll choose the 3rd time around. We'll see if the newer "treated" valve lasts longer. I did walk away from this one feeling less certain about everything, to be honest. Rattled me a bit. Not sure, still, if I could handle a mechanical with all its (presumed?) constraints and noises (I'm extremely sound sensitive). I absolutely hated being on warfarin.
Please do get a second opinion -- and a third if you need it! Informed decisions are best and everyone has their own physical peculiarities of structure, need and lifestyle.
Good luck and keep posting!
Thanks Margurite. I'm definitely going to get a second (at least) opinion. It is some real calculus going into figuring out which way to go.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
6,164
Location
Queensland, OzTrayLeeYa
Hi
your quoting failed to be easy to read because you just replied and stuck your stuff in the midst of mine ... meaning it was hard work reading it
my stuff
your stuff
its better to just not put it inside the quotes so that I can read it (and well we've lost the ability to select a section and quote it (such as we have the ability to select a section and bold it)

Lets see if I get all your points:


Yes, I'd suppose that a TAVR, at this point, will not buy me too many more years before I need to have another OHS. 8-1/2 years from the first one makes me think that a TAVR would only get me five or six more years, from this point.
I would want to be very confident on that data, personally I'm not, but its you who needs to be.

Making these decisions is not like picking a new washing machine, its far more life critical ... either that or you accept that "shooting for best outcome" is meaningless and you just take what you get ... that's valid too

My view is plain: at this point in your life only a mechanical is the best way to go. You already used up one of your surgeries (you can count them as "strikes") and you don't have an infinite number and you will often be incrementally worse after each.

Be cautious at listening to the advice of people who had their first operation at nearly 60 years old and aren't active. Its a different situation entirely.

Considering I got less than nine years out of the first one, I wouldn't think a TAVR would get me more than five or six.
I'd be on that page too , so what is all that buying you? Are you aware of the issues with TAVR (its not risk free you know). For instance during the placement of the valve with a transcatheter they have to be careful that calcium does not break off (which it does) and cause strokes by floating down stream. This is captured (in the main) by a deployed net system. If you examine that you may find its the reason for many strokes.


My aversion stems from the blood thinners. That's my only issue. I like to hike, cycle, and rock climb and the rock climbing (my absolute favorite activity) is the one that gives me pause.
that's what I expected ... why not search here for the plethora of "I was worried before it but the reality proved to be no big issue" posts.


What's AC therapy
Anti Coagulation therapy ... aka warfarin ... aka "blood thinners"

Minimal distortion of reality in decision making. It is all too often people use this framework for analysis of AC therapy (aka blood thinners, aka warfarin or coumadine):


and people imagine its like this if you cut yourself:


which it isn't.

Which is why I posted pictures of my activities, and you'll find that I've had an active life on warfarin, Cross Country Skiing, motorcycling regularly (daily driver) and many things which people think "you have to give up" (like foods) is simply wrong.

Good luck with the decision, but as I say in my blog post try not to just think about yourself, consider your family too.

http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html

I put a lot of time into that post and passed it by a number of people at the University I work in for their inputs (sort of Peer Review).

I strongly recommend (nay, urge) you to spend time on this:

and if you have a short attention span then just this portion

I do patient self management, and have done for years now (since 2012), its enabled me to live my life without any poroblems any restrictions and my INR has been 97% in range (clinics are often less than 70%).

Minimal Distortion of Reality ... go with the facts and the evidence in decision making (or just throw the dice).

Best Wishes
 
Last edited:

Warrick

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Joined
Dec 27, 2015
Messages
464
Location
New Zealand
@Chris if your original valve was bicuspid (which Im not sure it was) then you are much more prone to aneurysm even after AVR as it is a connective tissue disease. What I understand even with BAVD if you never have aneurysm the aortic artery tissue is still structurally different to normal aortic tissue.
Theres some info here to sieve thru https://badaorta.com/
 
Last edited:

pellicle

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Joined
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Messages
6,164
Location
Queensland, OzTrayLeeYa
@Chris
this is correct...
@Chris if your original valve was bicuspid (which Im not sure it was) then you are much more prone to aneurysm even after AVR as it is a connective tissue disease. What I understand even with BAVD if you never have aneurysm the aortic artery tissue is still structurally different to normal tissue.
Theres some info here to sieve thru https://badaorta.com/
and I'm glad Warrick has elaborated on that (I kept meaning to mention that)

Thanks leadville. Could you elaborate on your thought about an aneurysm? I don't believe I have one.
Here is some research to read:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3503270/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5469203/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5166604/



The development of an aneurysm in me (during my 40's) was a significant (major) contributor to my 2011 surgery because while the valve may have lasted another few years, the aneurysm wouldn't.

The only way to know about aneurysms is to go for regular ultra sounds and get measurements. Even if found they may not require operation. See guidelines here:

(american guidelines will be similar)

Also, when being taught about a topic its important to recognise that the teacher may have a bias, so equally when "self learning" be aware of any potential bias you may have. Attempt as much as possible to learn without bias towards personal feelings. It may leave you with "buyers remorse" for which there is no refund in heart surgery.

Equally as I mentioned earlier, just throw the dice as you wish and know that the outcomes are always going to be better than doing nothing.

Personally I'd draw from your outcome of your previous decision for a reasonable estimation of the future.
 

leadville

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Aug 28, 2017
Messages
182
Location
Wigan, England
@Chris

Sorry for the delay in my reply ...... uk time

Yes the aneurysm is worth a consideration, i'm glad you do not have one and i hope you
never develop one, mine was BAV

Thanks to @pellicle and @Warrick for supplying the information (y)
 
Last edited:

Chris

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Joined
Jul 19, 2011
Messages
50
Location
Los Angeles, CA
@Chris if your original valve was bicuspid (which Im not sure it was) then you are much more prone to aneurysm even after AVR as it is a connective tissue disease. What I understand even with BAVD if you never have aneurysm the aortic artery tissue is still structurally different to normal tissue.
Theres some info here to sieve thru https://badaorta.com/
Yes, I was born with a bicuspid aortic valve. I remember doctors commenting on it (sound) at annual checkups when I was a kid.
Thanks for the information and the link.

Chris
 

Chris

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Joined
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Messages
50
Location
Los Angeles, CA
And a general "Thank You" to everyone that's read and replied to this thread thus far. I'm going through everything so far as 'quickly' (but not hurrying) as I can digest it.

This forum is an amazing place. I'm grateful for all of the information.

Chris
 

leadville

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Messages
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Wigan, England
Yes, I was born with a bicuspid aortic valve.
you may develop an aneurysm as you were born BAV

we do not wish to worry you, it's worth knowing the association
with Bicuspid valve and aneurysms .

Knowledge is king

good luck with everything
 

Chris

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Joined
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Messages
50
Location
Los Angeles, CA
So I met with the surgeon that my cardiologist set me up with. When I saw my cardiologist, he advocated for a TAVR. I was unconvinced that was the right choice for me. Appealing, yes (potentially easier procedure & no anti-coagulant), but I really figured that it was time for a mechanical valve. He told me that the surgeon would tell me the same thing (go with a TAVR).

So I was a bit taken aback this afternoon when the surgeon (Dr. Eli Capouya) almost immediately said that I should get a mechanical valve. After all of the reading I've been doing, on this forum and elsewhere, I had come, slightly begrudgingly, to the same conclusion (before I saw him today).
We sat and talked for quite a while and went over every single thing I wanted to discuss, including the potential for an aneurysm. It doesn't look like I have any inkling of one at this point.

Next will be to get a heart cath scheduled and possibly have the SAVR, with a St. Jude valve, the following day.

Lots of emotions right now, but I do feel good to have come to a decision that jives with what my surgeon thinks. And I feel comfortable with him. And it'll be good to get this done and then not ever (fingers crossed) have to worry about having another OHS.

I am still going to see about getting a second opinion, but I'm less concerned about that after today.

If anyone has any personal experience with Dr. Capouya, I'd love to hear about it.
 
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