Valve Question

[Mellyouttaphase]

I am 31 and recently had a tissue pulmonary valve placed. I don't regret this choice but now that I know what it is like to go through open heart surgery I feel that minimising subsequent surgeries should always be a priority where possible. My previous OHS was a total repair of Tetralogy of Fallot when I was a toddler and the scar tissue from that operation had adhered my heart to my sternum. This complication totally changed the game for my surgical team and made the surgery much more difficult than it should have been. Repeat operations really are dangerous. My headspace in early days of recovery would have been totally different if I wasn't definitely looking at going through it all again in (hopefully) a decade.

2c from a tissue valve girl!

 

[Agian]

Surgeons do perform multiple ops. And there are some bloody good ones out there. However, normal people try to keep the number to a minimum.

The answer to his question is obvious:
He's already had two ops, he's young, he's already on Warfarin.

"Just become a fucking Terminator."

 

[David W]

[QUOTE=pellicle wrote.

"Do not give much credence to the "TAVI" sayers because for you at your age there is a critical point they ignore: the TAVI valves last less time and you can only have a valve in valve replacement once before a reop is needed. This will essentially leave you with the same time equation as a tissue valve that you already know will not last 20 years (or untill you are 50 in your best case)".


Unless your a surgeon with a crystal ball on his lap (and I've never come across one yet) why would you infer that your above text is gospel? It seems that whenever an opinion is required about "what valve" you seem to tissue bash with ease. From my experience from discussion with my highly respected surgeon in London and extensive fact finding I feel I chose the right valve for me, "a tissue valve" with the consideration of TAVI in the future. In spite of my choice I would still never have a sly dig at people on here who have chosen a mechanical valve as it was right for them, therefore I wouldn't loosely put my own preferences out there. We could all get run over by a bus next month so to try and mentalise everyone's future with bald prediction as you have leaves me scratching my head. Wouldn't it be best to just endorse individuality rather than hypothetical crystal ball gazing that constantly seems to comes down on the side of mechanical valves every time?

We all have a very differing perception of life and the futures and for me to get in here and denounce people who have chosen mechanical valves would be insensitive and naive at best.

 

[pellicle]

Unless your a surgeon with a crystal ball on his lap (and I've never come across one yet) why would you infer that your above text is gospel?

no, only a nutjob would infer that ... it is like your own, my opinion ... my opinion is based on my experience and research ... which I always recommend the reader double check. What's your opinion based on? Feelings? Emotional views? Advertising?

It seems that whenever an opinion is required about "what valve" you seem to tissue bash with ease.

My opinion has always been (if you bothered to read mine) that tissue valves (as distinct from TAVI) are ill suited to young people because they are a total certainty for reoperation (if you don't die before then). There is no crystal ball for that and its not even debated by the medical specialists.

Please identify where I have "bashed" tissue valves as a general thing? IF by posting evidence that they are ill suited to patients under 40 (again well established in the medical literature) you infer I'm bashing them, then I can only say you have a bias of your own that is somehow offended by the truth.

My opinion has on this forum always been that tissue prostheses are appropriately suited to patients over 60 and or patients with disorders which would preclude AC therapy. For patients in their late 20's through to late 50's a mechanical valve has the only opportunity possible to have you avoid repeat surgeries ... how many have you had again for the record please?

You may of course continue your black and white (no shades of grey) interpretations of my opinions as you wish, but my above summary position will emerge as a theme in all of my posts on the subject.

I applaud your ride to bring attention to the cause but please do read a little before you make accusations and judgements of me

 

[David W]

no, only a nutjob would infer that ... it is like your own, my opinion ... my opinion is based on my experience and research ... which I always recommend the reader double check. What's your opinion based on? Feelings? Emotional views? Advertising?



My opinion has always been (if you bothered to read mine) that tissue valves (as distinct from TAVI) are ill suited to young people because they are a total certainty for reoperation (if you don't die before then). There is no crystal ball for that and its not even debated by the medical specialists.

Please identify where I have "bashed" tissue valves as a general thing? IF by posting evidence that they are ill suited to patients under 40 (again well established in the medical literature) you infer I'm bashing them, then I can only say you have a bias of your own that is somehow offended by the truth.

My opinion has on this forum always been that tissue prostheses are appropriately suited to patients over 60 and or patients with disorders which would preclude AC therapy. For patients in their late 20's through to late 50's a mechanical valve has the only opportunity possible to have you avoid repeat surgeries ... how many have you had again for the record please?

You may of course continue your black and white (no shades of grey) interpretations of my opinions as you wish, but my above summary position will emerge as a theme in all of my posts on the subject.

I applaud your ride to bring attention to the cause but please do read a little before you make accusations and judgements of me

Thanks for taking the time to respond. So to get a few things out of the way, I don't need to clarify additional conduits of how I arrived at my opinion as i've clearly noted this in my last response. Neither will I get into a game of who's got the longest CV or provide my medical background with which to satisfy any enquiries to inspect my opinions for credibility.

I have a duty of care to old and new in this forum when replying to any thread, but in relation to the repetitive dilemma of what valve to choose as it’s a massive decision for anyone, irrespective of what age group they fall into, because so many existential factors play a role in influencing their choice. Therefore in the interests of keeping my views balanced, what I do try and omit from anything I write are the reasons why I (didn't) choose a mechanical valve and simply disregard. So when making remarks about my valve choice I maintain a prose that is positive to my choice of valve and not negative toward the valve I didn't choose. This is where I have a problem with your remark, there seems to be much projecting with it.

If I remember correctly the only disagreement I've had on this forum is with you on the same subject, hence my nod to a theme. From my experience in the forum prior to my choice of valve and operation, I was fortunate to have received guiding words from people who would offer advice based on their choice, but they never once viewed the opposing valve choice with enmity or had disdain for individuals points of view that differed from theirs.

To clarify, I've not made any judgements of you, I've made a judgement and observation of your words.

You wrote “Do not give much credence to the TAVI sayers”. That's quite a sloppy statement to make in spite of your best intentions. If, as you imply, anyone with a different opinion to yours falls into a category of somehow lacking credibility based in their valve choice then that's an incredibly short sighted appraisal of the world outside of your frame of reference and quite insensitive. If you are a renowned surgeon, please advise as I am happy enough and big enough to apologise and file into rank. If however you are the layman like everyone else in the forum who has gone through the discomfort of valve choice, had the surgery and has access to the same material as everyone else in making that choice then I would merely ask you to assume a role of reflection with your choice of words even if you think that your opinion is the truth. The problem is that everyone's truth is their truth irrespective of projections about the “possible” life of a valve without being influenced by additional complexities that may arise post surgery.

It's an incredibly emotive experience to decide on what valve to have and discrediting certain individuals in the way you have based on their beliefs is, at best, arrogant. I would have given the curtesy to forum members to not disfavour anyone with a view different to mine and reflected upon words used to convey my beliefs with awareness and empathy, yet it is you who points a finger at me in relation to black and white thinking!! If their was ever a more succinct use of the saying “the pot calling the kettle black”…………..

This is a forum of support, to soothe comfort and inspire. I am aware of all of the time and effort that you take to uphold these values and you have offered words of encouragement to myself in the past which has been greatly appreciated. So I was a little taken aback by your comment and needed to respond.

 

[dick0236]

I just trying to find the way to research the types of aortic valve that are use to replace mine. This will be my 3 time getting it replaced and I'm 30 years old. The first time I chose the pig valve and that didn't last an hour or so after they closed me up and now I have the freestyle valve and had it for just over 9 years. My last echo so that it decrease in size by .6 mm I believe and now I'm in the severe aortic stenosis. I just want to research to try to get the one that would last for the rest of my life. Thanks for any information in advance.

Before we start the valve war all over again, the young man started this thread to get info on the "one that would last for the rest of my life" and since he is not at all concerned with warfarin use and is only 30 now, that would indicate a mechanical valve.

 

[pellicle]

Hi

Thanks for taking the time to respond.

no worries ... I usually do ..

Neither will I get into a game of who's got the longest CV or provide my medical background with which to satisfy any enquiries to inspect my opinions for credibility.

agreed ... its the veracity of the points and their ability to stand scrutiny that matters

I have a duty of care to old and new in this forum when replying to any thread

you may have noted that I take my duty seriously too ... you may have noted that I actually even vet my own posts and have posted corrections of myself. I take my duty of care so highly that I actually follow up on advice I give ... I even go to the lengths of helping people outside of this domain with exactly the things I've offered to them in this forum.

If I remember correctly the only disagreement I've had on this forum is with you on the same subject, hence my nod to a theme.

well perhaps you misunderstood what was the intention ... perhaps

From my experience in the forum prior to my choice of valve and operation, I was fortunate to have received guiding words from people who would offer advice based on their choice, but they never once viewed the opposing valve choice with enmity or had disdain for individuals points of view that differed from theirs.

again you imply and accuse ...

To clarify, I've not made any judgements of you,

except to state I bash the opposition and engage in attacks of enmity

I've made a judgement and observation of your words.

fine line there my friend.

You wrote “Do not give much credence to the TAVI sayers”. That's quite a sloppy statement to make in spite of your best intentions.

perhaps .. but if you look around you'll soon see many saying "oh go with XXX as soon TAVI will be available".

This is equally sloppy, but you make no call on that? Instead you call me out for saying that is sloppy.

Well as yet we still do not have evidence of a proven track record of TAVI ... as yet TAVI is still (as it has been for decades) in the realm of "research and development" with that research being in the evaluation of what happens to it in people" and it has been (so far) confined to those who are so frail as to not be deemed to be a suitable candidate for regular OHS.

This is a forum of support, to soothe comfort and inspire. I am aware of all of the time and effort that you take to uphold these values and you have offered words of encouragement to myself in the past which has been greatly appreciated. So I was a little taken aback by your comment and needed to respond.

that's laudable, perhaps you'll be equally taken aback when someone bashes me here ... or will you just watch?

You do seem to have your own agenda and seem to be hiding behind "good intentions"

I myself have nothing invested in anyones valve choice, but I do try my best to being INFORMATION to the table. For as the literature bangs on and on and on about, its informed choice of the patient.

I try to inform so that others may make decisions.

If I am empassioned about it ... well I've had three surgeries, and some complications. If you have been through that (and you may yet) then I hazard a guess that you'll be feeling empassioned too.

I regularly state that there is much that does not appear in the stats, much that is lost in the process; the focus on morbidity that is the focus of the journals. Complications which do not result in your death are ignored. Yet (strangely) when that spotlight is turned to warfarin use it becomes not about death but about specific events (like bleeds or thrmobos) and always with the worst possible stats on warfarin. Yet, when tissue prosthesis is examined that is the comparison made. There is no discussion - no clear data - on what are the sorts of complications which redo operations gave: pace makers, infections that went on for years, nerve damage ... nope nothing much.

In truth this is a very complex subject and goes beyond the expertise of cardiologists and surgeons for it moves into the realm of long term data gathering and nearly into epidemiology.

None the less (as Dick has observed) you have failed to observe the specifics of the question asked and have more or less (in my opinion) launched into denigrating me. You criticize me but perhaps you fail to observe that you are guilty of the same.

As you rightly point out, this is a forum of support .. it is also a forum of information too. Is it not reasonable to question the veracity of that information?

Support is unilaterally support and needs no questioning, but does not information require something?

 

[pellicle]

Before we start the valve war all over again...

actually in this case I don't think its about that, I think its about me ...

and I love your words "the young man" ... hopefully one day I'll be saying stuff like that. I think I'm on the path there already (the path of becoming old) as people are now starting to call me "Sir" ... which scares the shitter out of me. Just the other day I slowed on my motorbike at an intersection to wave a "young man" (there I've said it) through. I use an open face around town (so I can smell the smells of the suburban area I live in) and he could see my face clearly. Looking me in the eye he said:

Thank you Sir, hope you have a great day

oh well ... live long enough and you get that "older look"

BTW, my current ride is a 500cc scoooter:

perhaps contributing more to the "old bugger" look (and I was dressed in my best work shirt from doing kitchen renos)

more so than my last bike:

Back in my teens and 20's my surgeon used to usually tell me that I was a "temporary Australian" for riding bikes

"... aren't we all" I'd say back with a smile

 

[Agian]

I'm guilty of derailing threads, but Uncle Dick is right. Young guy, already on Warfarin...

Pel, calling someone 'Sir' isn't just about age, but yeah, we all age together.

 

[David W]

Hi



no worries ... I usually do ..



agreed ... its the veracity of the points and their ability to stand scrutiny that matters



you may have noted that I take my duty seriously too ... you may have noted that I actually even vet my own posts and have posted corrections of myself. I take my duty of care so highly that I actually follow up on advice I give ... I even go to the lengths of helping people outside of this domain with exactly the things I've offered to them in this forum.





well perhaps you misunderstood what was the intention ... perhaps



again you imply and accuse ...



except to state I bash the opposition and engage in attacks of enmity



fine line there my friend.



perhaps .. but if you look around you'll soon see many saying "oh go with XXX as soon TAVI will be available".

This is equally sloppy, but you make no call on that? Instead you call me out for saying that is sloppy.

Well as yet we still do not have evidence of a proven track record of TAVI ... as yet TAVI is still (as it has been for decades) in the realm of "research and development" with that research being in the evaluation of what happens to it in people" and it has been (so far) confined to those who are so frail as to not be deemed to be a suitable candidate for regular OHS.




that's laudable, perhaps you'll be equally taken aback when someone bashes me here ... or will you just watch?

You do seem to have your own agenda and seem to be hiding behind "good intentions"

I myself have nothing invested in anyones valve choice, but I do try my best to being INFORMATION to the table. For as the literature bangs on and on and on about, its informed choice of the patient.

I try to inform so that others may make decisions.

If I am empassioned about it ... well I've had three surgeries, and some complications. If you have been through that (and you may yet) then I hazard a guess that you'll be feeling empassioned too.

I regularly state that there is much that does not appear in the stats, much that is lost in the process; the focus on morbidity that is the focus of the journals. Complications which do not result in your death are ignored. Yet (strangely) when that spotlight is turned to warfarin use it becomes not about death but about specific events (like bleeds or thrmobos) and always with the worst possible stats on warfarin. Yet, when tissue prosthesis is examined that is the comparison made. There is no discussion - no clear data - on what are the sorts of complications which redo operations gave: pace makers, infections that went on for years, nerve damage ... nope nothing much.

In truth this is a very complex subject and goes beyond the expertise of cardiologists and surgeons for it moves into the realm of long term data gathering and nearly into epidemiology.

None the less (as Dick has observed) you have failed to observe the specifics of the question asked and have more or less (in my opinion) launched into denigrating me. You criticize me but perhaps you fail to observe that you are guilty of the same.

As you rightly point out, this is a forum of support .. it is also a forum of information too. Is it not reasonable to question the veracity of that information?

Support is unilaterally support and needs no questioning, but does not information require something?

So are you expecting me to reply to this so you can eagerly refute someone else's opinions once more and respond by cherry picking what you deem to be worthy with quite (petulant sounding) responses?

Is that the itinerary?

(You) made a very bald statement by saying "Do not give much credence to the TAVI Sayers" and that in itself is quite a loaded choice of words. It seems you struggle to (reflect) on these words for their hauteur as they boldly disparage the hopes of many who value the prospect of TAVI being a part of their future. You've blatantly ignored this just because you have an opinion?

Would many have written the following “Do not give much credence to the mechanical valve Sayers".

I very much doubt it because of its very naïve swagger.

 

[Nocturne]

I'm guilty of derailing threads.

I'm afraid all you're derailing at this point is a pissing contest. ;^)

Just wanted to say that I agree. I missed the fact that the OP was already on Warfarin. Given that fact, I can't think of a good reason why he shouldn't go with a mechanical valve. The ticking noise? Doesn't seem like enough of an issue to me.

My mistake for not fully realizing the OP's condition!

 

[Agian]

David, TAVI is indeed promising, but you've got to look at the context, as well.
We're all entitled to an opinion. People express something unpopular, others oppose it. So what?
TAVI is inevitable, but for a thirtysomething already on Warfarin, the equation changes.
We should all be able to speak freely. We will in the process rattle people and contribute to anxiety. We really don't know who might be reading the forum. That's the risk we take when we go online and ask for advice from laypeople, who ultimately express a view based on their own experiences.

 

[cldlhd]

Plus, as I'm sure it's already been pointed out, assuming a tissue valve in a younger person gets 15 yrs then if the OP is 35 then it would be TAVI at 50 ( if available ) then at 65 what? I doubt you could have valve in valve in valve. Besides IMO, and I'm no expert, a valve in valve will yield less flow due to being restrictive. Not trying to tell anyone what to do just saying what I would be thinking.

 

[David W]

David, TAVI is indeed promising, but you've got to look at the context, as well.
We're all entitled to an opinion. People express something unpopular, others oppose it. So what?
TAVI is inevitable, but for a thirtysomething already on Warfarin, the equation changes.
We should all be able to speak freely. We will in the process rattle people and contribute to anxiety. We really don't know who might be reading the forum. That's the risk we take when we go online and ask for advice from laypeople, who ultimately express a view based on their own experiences.

Hey I couldn't agree more about being able to accept another opinion if it's constructive. The point I am trying to convey is that many people agonise over valve choice. I know I did. It's so easy to discredit the valve you didn't choose rather than just endorse the valve you did choose. Ive witnessed so many ding dongs in hear around this topic. People hedge a lot of bets on a particular valve after sifting through so much information prior to making that choice, so for that reason I have never spoken negatively against the valve I didn't end up having because of this fact and the emotive weight behind people's choices. I'm very careful with the words I use. That's all I was trying to say.

 

[pellicle]

...so for that reason I have never spoken negatively against the valve I didn't end up having because of this fact and the emotive weight behind people's choices. I'm very careful with the words I use. That's all I was trying to say.

again, I have not spoken negatively about any valve, nor have I said "you should chose what I chose" ... please furnish evidence where I have. At worst I have provided evidence (something you are loth to do) to support my views. As I've said before I've even supported tissue prosthetic as the optimal choice for anyone over 60 especially if they have a condition that makes AC therapy impracticable. You choose to ignore that because it doesn't sit well with your slant that I'm a biggot.

I'm careful with words too ... and I stand by my words that "hopeful people" banking on "developments" which have not arisen yet should be considered cautiously in an analysis of WHAT IS the situation for you.

Of course many go to the casino, so gambling is part of human nature. As long as you know you're gambling then that's fine. If you pretend that the conjectures of the future are somehow fact than that's self deception.

Note also that I have given that advice to which you take great exception to a specific case.

You seem to have quite a barrow to push yourself (while accusing me of it). You've failed to engage with the facts as I've presented them (part of informing) and instead engage in emotional laden arguments about me and what you percieve I've said.

I come here to help people, tell me what you've said here in any way provides help or support? You have not given a shred of evidence to discredit (or offer counter views) to my evidence you've just argued about me.

At the risk of giving you advice, I say you should take your own advice and restrict your posts to constructive ciriticism (preferably of the evidence or data rather than the messenger) and support of people who are anxious or asking for information.

 

[cldlhd]

When I first came out here in April of 2014 I was looking for support AND information. Of course it felt great to have people who had been thru it tell me it would be fine but I also had a big decision to make and to me personally the facts were more important. So I think both have their place but if the OP is looking for info to help with a decision then I feel it should be told like it is. I know we all have our own perceptions and all that but not our own stats. To tell someone heading into surgery they'll be fine is the right thing to do, even though you don't know obviously, but to imply signing up for multiple surgeries is not a big deal is wrong.

 

[Agian]

When I first came out here in April of 2014 I was looking for support AND information. Of course it felt great to have people who had been thru it tell me it would be fine but I also had a big decision to make and to me personally the facts were more important. So I think both have their place but if the OP is looking for info to help with a decision then I feel it should be told like it is. I know we all have our own perceptions and all that but not our own stats. To tell someone heading into surgery they'll be fine is the right thing to do, even though you don't know obviously, but to imply signing up for multiple surgeries is not a big deal is wrong.

You know once you've had your appendix out, you stop worrying about your appendix. With this, it has the potential to haunt you for the rest of your life.
Is there ever 'closure'? We're an anxious bunch.

 

[neil]

who wants multiple surgeries not me, who wants to be on anti coags for the rest of your life not me,who wants to have valve problems not me, but we all have to make the choice, it isn't easy its bloody hard, is there a right choice ,YES, for each individual there is, whatever path you choose to go down is the right one for YOU, nobody wants to make the choice but we have to, I have 3 fairly close valve friends who I meet up with, luckily 2 of us choose tissue 2 mech, we have some real laughs and leg pulling about who is right and wrong and all agree there is plus and minus, one of my friends has a few problems with warfarin and is always moaning about it, I know when I need mine changing I will be cert be moaning about a re op lol, but that's the path we have chosen, we have got to accept people will always take different paths and we have got to do our best to help them down that road,

 

[cldlhd]

I totally agree we should accept whatever path someone chooses but if I'm not mistaken the OP hasn't made that choice and is looking for advice. Whatever he chooses you won't find me out here slagging him but if he's 30 , already on warfarin and has a few surgeries in the book I think the vast majority of logical thinkers would say he should choose a mechanical valve. Neil you readily imply one of the reasons you went tissue is to avoid warfarin, well if he's on it anyway then unless the noise would bother him too much it's not like he's looking to get pregnant.
Also I assume tissue valves wear out quicker in some than others and his current tissue only lasted 9 years.

 

[Agian]

I totally agree we should accept whatever path someone chooses but if I'm not mistaken the OP hasn't made that choice and is looking for advice. Whatever he chooses you won't find me out here slagging him but if he's 30 , already in warfarin and has a few surgeries in the book I think the vast majority of logical thinkers would say he should choose a mechanical valve. Neil you readily imply one of the reasons you went tissue is to avoid warfarin, well if he's on it anyway then unless the noise would bother him too much it's not like he's looking to get pregnant.
Also I assume tissue valves wear out quicker in some than others and his current tissue only lasted 9 years.

Well, this is the context, isn't it?
1) Two OHS already
2) Tissue valve has only lasted 9 years.
3) 30 years old (!!!!)
4) Already on Warfarin, which he says is not a big deal
5) He has the option to choose whichever valve he wants and was just asking for advice

Everything else is fluff. Your feelings are hurt only if you allow them to be.