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AZATADINE

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Aug 30, 2021
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129
Just cross posting from Reddit in case someone has a Trifecta valve that was implanted between 2010 and 2015. Hopefully I'm not breaking any forum rules.

 
if people like me who've had 3 OHS's and had a repair, then a homograft and finally a mechanical post something like that then we get called "tissue bashers"

I call it the votedown of truth.

I've found however that you can't really inform someone who isn't interested in being informed beyond the fulfilment of their confirmation bias goals of 'information' seeking
 
I remember when I met my surgeon prior to my surgery, he was very insistent in terms of recommending that we use the Edwards Magna-Ease valve if tissue was my choice, precisely for the reason that the valve is well established with a great record. I remember the conversation very well as I'd bee asking about some newer options but he was very insistent, particularly given my age of early 50's.
 
if people like me who've had 3 OHS's and had a repair, then a homograft and finally a mechanical post something like that then we get called "tissue bashers"

I call it the votedown of truth.

I've found however that you can't really inform someone who isn't interested in being informed beyond the fulfilment of their confirmation bias goals of 'information' seeking
Pellicle, I have been on this site for nearly 11 years and have regularly read your posts.

IMHO - you are inherently a "tissue basher" always have been and always will be.

please be honest with yourself

whereas I truly believe both mechanical and tissue valves offer patients a choice and depending on the particular patient circumstances a clear path to a successful outcome.

I know you will reply - as you can't resist !! 😂
 
Dear Mike
Pellicle, I have been on this site for nearly 11 years and have regularly read your posts.

IMHO - you are inherently a "tissue basher" always have been and always will be.
Then you should stop your selective reading and pay more attention, unless the truth of the matter is that you are actually only wanting to build a picture that confirms your binary simplistic view of me.

If you look you will find that I regularly suggest to people that their choice of a tissue valve is completely reasonable and perhaps the best bet; I say this when
  • they are over 65 and this is their first surgery
  • they have complications which will make managing warfarin a hazzard
  • they seem to be unwilling to properly manage warfarin
These were once the universally recognised surgical guidelines and remain that way outside of the USA.

I suggest you have a cognitive bias to anyone (perhaps mainly me) suggesting what you are not ensconced in. So I'm saying you are tribal about this matter, you fail to see that its not a football game or a washing machine (where there is no harm in getting another if the one you bought failed in 10 years)

So I suppose from your taking the time to reply and call me out, that you are one of the handwringers who say "there is no wrong choice" am I right?

If so then you are dead wrong, there are choices which will lead to sub optimal outcomes, subjecting the person to further risks and harm.

The selection of the right choice (or the optimal choice) requires actually understanding the patient, their needs their critera (like age) and then thinking about stuff. Thinking about stuff is best had in also discussing ideas with others; preferably others with an open mind, so that new ideas or angles can be considered.

Most certainly the decision is complex and has many dimensions, but to simply throw up your hands, disengage and say "there is no wrong choice" is doing the poster a disservice. Many people can't think however, which is not a slight on them but simply the truth.

If you think telling a 20yo, a 30 or 40yo to have 3 surgeries is a good plan then I'd like to read your justifications. Due diligence requires assisting a person to make an informed choice. Informed means dispelling false ideas and explaining what they don't know. False ideas are such as:
  • the many misconceptions about living on ACT
  • the misconceptions that a tissue valve will last you over 20 years (in all cases)
  • understanding what is in the literature about valves

I believe all commenters have the obligation to do due diligence in their replies, and not just push their own agenda. Show me you do due diligence in your replies not just say "get a tissue" or "there is no wrong choice".

On tribalism I'll say this; ust like the word terrific and the word gay have been twisted the word idiot has been lost to misunderstanding too, the truth about idiocy, which is that it is at once an ethical and a cognitive failure. The Greek idios means “private,” and an idiōtēs means a private person, as opposed to a person in their public role.

The public role is to be responsible to the asker, a responder being tribal is being idiotic because they fail to grasp their public role, which entails, or should, a relation of active concern to others. Typically here the pro tissue set remain not involved. It is not their problem, it worked for them (though they be over 60 at surgery and have made mistakes by believing opinions of one or two rather than the overall data.

Best Wishes
 
Dear Mike

Then you should stop your selective reading and pay more attention, unless the truth of the matter is that you are actually only wanting to build a picture that confirms your binary simplistic view of me.

If you look you will find that I regularly suggest to people that their choice of a tissue valve is completely reasonable and perhaps the best bet; I say this when
  • they are over 65 and this is their first surgery
  • they have complications which will make managing warfarin a hazzard
  • they seem to be unwilling to properly manage warfarin
These were once the universally recognised surgical guidelines and remain that way outside of the USA.

I suggest you have a cognitive bias to anyone (perhaps mainly me) suggesting what you are not ensconced in. So I'm saying you are tribal about this matter, you fail to see that its not a football game or a washing machine (where there is no harm in getting another if the one you bought failed in 10 years)

So I suppose from your taking the time to reply and call me out, that you are one of the handwringers who say "there is no wrong choice" am I right?

If so then you are dead wrong, there are choices which will lead to sub optimal outcomes, subjecting the person to further risks and harm.

The selection of the right choice (or the optimal choice) requires actually understanding the patient, their needs their critera (like age) and then thinking about stuff. Thinking about stuff is best had in also discussing ideas with others; preferably others with an open mind, so that new ideas or angles can be considered.

Most certainly the decision is complex and has many dimensions, but to simply throw up your hands, disengage and say "there is no wrong choice" is doing the poster a disservice. Many people can't think however, which is not a slight on them but simply the truth.

If you think telling a 20yo, a 30 or 40yo to have 3 surgeries is a good plan then I'd like to read your justifications. Due diligence requires assisting a person to make an informed choice. Informed means dispelling false ideas and explaining what they don't know. False ideas are such as:
  • the many misconceptions about living on ACT
  • the misconceptions that a tissue valve will last you over 20 years (in all cases)
  • understanding what is in the literature about valves

I believe all commenters have the obligation to do due diligence in their replies, and not just push their own agenda. Show me you do due diligence in your replies not just say "get a tissue" or "there is no wrong choice".

On tribalism I'll say this; ust like the word terrific and the word gay have been twisted the word idiot has been lost to misunderstanding too, the truth about idiocy, which is that it is at once an ethical and a cognitive failure. The Greek idios means “private,” and an idiōtēs means a private person, as opposed to a person in their public role.

The public role is to be responsible to the asker, a responder being tribal is being idiotic because they fail to grasp their public role, which entails, or should, a relation of active concern to others. Typically here the pro tissue set remain not involved. It is not their problem, it worked for them (though they be over 60 at surgery and have made mistakes by believing opinions of one or two rather than the overall data.

Best Wishes
Dear Pellicle

As I mentioned in my earlier post I was right- you wouldn't be able to resist replying 😂

could you clarify something- are you unhappy with your surgical choices in the past?

please open your mind and look beyond your singular binary thoughts and adopt a more inclusive way of thinking and accept both options give great outcomes depending on age, and other medical factors.

I can assure you by opening your mind, you will undoubtably enjoy life to the full.

Please enjoy life - no one gets out alive

very best wishes
 
Hi
could you clarify something- are you unhappy with your surgical choices in the past?

sure, and my answer is no. My answer is no because I am quite sure that I had the best possible choices available to me at the time, not all of them I had any say in.

When I was 10 they chose to not replace the valve but to repair it surgically. In 1974 there were not good options really for a 10 year old.

When I was 28 I was offered a homograft, which I was told "we wouldn't know how long it will last". I was told the other choice was a mechanical valve and warfarin. Despite being just out of a biochem degree I didn't really know much about that drug and really didn't have any negative views. I picked the homograft which as I've published before here was probably my best possible choice given:
  • its eventual durability (I would point you at this post I made for that data)
  • at the time (1993) warfarin management was not as it is today, and point of care and self management was not available until nearly a decade later. The homograft gave me 20 years of trouble free life and were it not for the aneurysm may have been a bit longer.
  • my choice on surgery #3 was quite plain to me, it was the mechanical valve. At 48 years of age and being quite active I knew that I'd be fronting up for surgery #4 by the time I was in my 60's perhaps earlier (seeing some posts here has clarified that for me). Given the complexity of my surgery (the aortic arch anatomy) and all the left over bits, scar tissue and what not I would expect that a 4th surgery would leave me alive (rather than dead) but facing an uphill battle to regain fitness and perhaps in the face of significant degredations in health (a pacemaker would not be a surprise with so many surgeries and scar tissue around the AV Node).
So no, I'm very satisfied with the good advice I've been privy to and I would unequivocally say that my heart issues and the subsequent challenges it gave me have made me who I am today (and that's fairly healty and sufficiently fit for my age).


please open your mind and look beyond your singular binary thoughts and adopt a more inclusive way of thinking and accept both options give great outcomes depending on age, and other medical factors.

this comment has no basis in evidence ... and I assume it is just intended to be inflammatory and not in good spirit ... as indeed I've answered you in.


I can assure you by opening your mind, you will undoubtably enjoy life to the full.

So, if you have lived life as fully and happily as I have then you have no reason to be the way you are. You can find quite a lot about my happy and full life, there have been difficulties and tragedies but among them is not being forced into a 4th and 5th surgery by some misguided person without clear access to the facts or apparently much experience.

At least I don't stoop to trolling people to elicit responses so you can then snidely attack them further. You have all of the genuine good faith of a politician.

You can find plenty of evidence to my quality of life here if only you were interested in learning about me and or even listening to anything I have to say.

Here is a thread with some of that evidence.

Best Wishes
 
Last edited:
There is a place for both.
indeed there is. There is also a place where one is better than the other and for good reasons. Aren't you the person who denied that SVD was related to the immune system? Seeking knowledge is part of why people come here. Some come here however to seek confirmation for their personal view (and think that is research).

Best Wishes
 
In fairness, I was the OP and I was happy to post about the issue with Trifecta and I'm a tissue valver at 52 myself (albeit a different valve). I dont really have any bias (that I'm aware of anyway). Given my own operation 5 months ago and my recovery, I'd still choose the exact same path.

However, I'll be one of the first to admit that INR management was nowhere near as bad as I expected it to be. After initial challenges dialling it in, it really wasn't a big deal for me for the 3 months that I was on it. That said, I'm happy to be off it but it's not as bad as people fear. I will need reintervention at some stage and warfarin won't be as big a concern in terms of my decision at that time.

Yes, I was the poster who wasn't aware that the immune system plays a response but it was the nature of the previous post stating that the tissue valves are being "attacked" that riled me a bit. Some posters on here, not sure whether on purpose or not, can be abrasive in how they post. I also accepted that I was wrong in my assumption. No big deal. I learned something new.

I do sometimes wonder why this particular forum seems to generate polar opposite opinions and sometimes those opinions can be ascerbic I nature. I suppose I get a bit defensive myself when I get the feeling that my own choice is being dismissed as a poor choice but I knew exactly what I was opting for at the time and I'm happy with my choice. Many others would likely have gone mechanical for a myriad of good reasons but so be it.

I love the posts and threads on here that document people's personal experiences with the surgery and recovery. I justxwish that so many don't always boil down into tissue vs mechanical face offs.

Anyway, all good 👍
 
Hi


sure, and my answer is no. My answer is no because I am quite sure that I had the best possible choices available to me at the time, not all of them I had any say in.

When I was 10 they chose to not replace the valve but to repair it surgically. In 1974 there were not good options really for a 10 year old.

When I was 28 I was offered a homograft, which I was told "we wouldn't know how long it will last". I was told the other choice was a mechanical valve and warfarin. Despite being just out of a biochem degree I didn't really know much about that drug and really didn't have any negative views. I picked the homograft which as I've published before here was probably my best possible choice given:
  • its eventual durability (I would point you at this post I made for that data)
  • at the time (1993) warfarin management was not as it is today, and point of care and self management was not available until nearly a decade later. The homograft gave me 20 years of trouble free life and were it not for the aneurysm may have been a bit longer.
  • my choice on surgery #3 was quite plain to me, it was the mechanical valve. At 48 years of age and being quite active I knew that I'd be fronting up for surgery #4 by the time I was in my 60's perhaps earlier (seeing some posts here has clarified that for me). Given the complexity of my surgery (the aortic arch anatomy) and all the left over bits, scar tissue and what not I would expect that a 4th surgery would leave me alive (rather than dead) but facing an uphill battle to regain fitness and perhaps in the face of significant degredations in health (a pacemaker would not be a surprise with so many surgeries and scar tissue around the AV Node).
So no, I'm very satisfied with the good advice I've been privy to and I would unequivocally say that my heart issues and the subsequent challenges it gave me have made me who I am today (and that's fairly healty and sufficiently fit for my age).




this comment has no basis in evidence ... and I assume it is just intended to be inflammatory and not in good spirit ... as indeed I've answered you in.




So, if you have lived life as fully and happily as I have then you have no reason to be the way you are. You can find quite a lot about my happy and full life, there have been difficulties and tragedies but among them is not being forced into a 4th and 5th surgery by some misguided person without clear access to the facts or apparently much experience.

At least I don't stoop to trolling people to elicit responses so you can then snidely attack them further. You have all of the genuine good faith of a politician.

You can find plenty of evidence to my quality of life here if only you were interested in learning about me and or even listening to anything I have to say.

Here is a thread with some of that evidence.

Best Wishes
Hi again

Thanks for your prompt response- very interesting summary of your past surgical procedures- and very pleased to see you are happy with your choices

as you can see from my earlier post - I truly believe both tissue and mechanical valves offer patients very successful outcomes - depending on age and medical conditions.

Clearly you are a very sensitive chappie and it leads me to wonder why you feel that way, and why you are so defensive in your comments and replies.

I sincerely hope you find happiness and comfort in the fact that you made the right choices in the past.

if you need any help - please DM me and I will do my best to assist wherever possible.

remember the saying - no body gets out alive - so enjoy life and try not to take life too seriously

in the meantime- I hope you have a good day

best wishes
 
Clearly you are a very sensitive chappie and it leads me to wonder why you feel that way, and why you are so defensive in your comments and replies.

Because I care, because I hate misinformation.

Better that than insensitive and uncaring

if you need any help - please DM me and I will do my best to assist wherever possible

Troll is clearly is then

Good bye
 
Thanks for the info about the Trifecta. My surgery was 02-2015 at age 66. So far, so good.

Great to hear that!
Keep in mind that the vast majority are doing fine. But, due to the relatively high failure rate, getting it checked out more frequently than one would otherwise might be warranted, as suggested in the study.
 
I'm a tissue valver at 52 myself
I will need reintervention at some stage and warfarin won't be as big a concern in terms of my decision at that time.

We had our operations at about the same age. I chose a mechanical and you chose tissue. I chose mechanical because I wanted to be one and done. However, you made the correct choice for yourself because you approached the decision informed. That is, you are fully aware that your choice means that you will need a reintervention.

People often will throw the statement out there: "There is no wrong choice."
I would agree somewhat. But, I would add this important modification: "As long as a choice is informed, there is no wrong choice."

If a young person chooses a tissue valve, even if the choice is outside the recommended guidelines, that is not a wrong choice, as long as they made the choice informed, meaning that they are aware that this means that they will need reoperation in the future. Also, part of being informed, in my view, would mean to have a realistic understanding of what life on warfarin is like, not a view driven by myth.
We have had people make claims, without any evidence, that the new tissue valves will last 2x to 3x as long as the last generation. Now, if a person in their 40s or 50s chooses a tissue valve based on this fantasy, believing that they will not need a future intervention, I would argue that their choice was not an informed one. Perhaps it was even wrong for them. In fact, there have been a number of relatively young people who have posted on the board that after 8 to 10 years they are needing a reoperation. Some are very upset and express that they believed their valve was going to last longer than it did, even though 8 to 10 years would be a very normal valve life expectancy for a young person. There clearly is some misinformation going into some of these decisions.

So, yes, it is a personal decision and each of us must make our own decision based on what is best for us. There are no wrong choices, as long as the choices are informed.
 
Hi

firstly I'm in no way negative about your choice. Its your choice and more than that its in there now, so you're on for the ride. Further I believe that for you that choice was quite reasonable and sensible.

This response address only this:

I justxwish that so many don't always boil down into tissue vs mechanical face offs.

and I write not so much for you but for the many lurkers.

Well there are indeed only two to choose from and so it must boil down to one of those.

If you don't care about what valve you pick then its simple: don't ask and just pick it.

Nobody here (especially me) will tell anyone to change their mind about a choice, and most of the worst arguments come down to tribal views people hold strongly. The most common seem to be:
  • my surgeon told me a tissue valve will last my lifetime, but if it doesn't then I can have a TAVR : depending on your age the first part is true, the second is not a given
  • I can't pick a mechanical because I can't eat greens if I'm on warfarin : patently untrue but somehow people still argue this (usually only those who aren't on warfarin
  • sure the old tissue valves don't last more than 15 years, but the new ones will : this is sadly only a hope and not backed by any actual evidence or reasons other than "new and improved" on the box
I suspect that part of the problem is that people don't actually read the posts and are dismayed by it. Further most people are inexperienced with science, inexperienced with discussions and its been a long time since they went to school and thus are not good at differentiating evidence from falsehood.

This table addresses some interesting points about discussion and what is probably 100% misunderstood by many people: that an argumentative writing style is bad and being emotional appealing is good.

1649536087865.png


So, for instance, when someone says "you can eat greens" if the person saying you can't doesn't address the facts presented but moves on to just other points against (say) a mechanical then you know that their point is weak.

Lots of words so far, because sadly just like conspiracy theory, its easy to say lies and often harder to contradict them in 5 words, not least because its time consuming to put forwards the evidence as to why a line of reasoning is valid.

Next its well known in the research community around heart valves that age is the primary indicator for choice - meaning as you age a tissue prosthesis is less likely to fail before you do

1649536573746.png

So at around the age you are at there is quite an overlap of which is clearly more well suited to the role. Clearly at a younger age (say between 25 and 50) a mechanical valve will be the only choice that enables you to minimise surgeries.

People often don't think past 10 years but only think in points about pre and short term post surgery. This is something I've seen here many times, and that people think that a one or even 5 year "valvaversary" is a big thing indicates that is perhaps true. As you know I've had greater than 20 years between my surgeries and come to expect that. So many of the points that long term mechanical valvers (like Dick or Superman or I) bring up relate to those questions.

Lastly (and it should be obvious but often isn't) we do not have any cure for valvular heart disease, we instead exchange valvular heart disease for "prosthetic valve disease". One is managed surgically by monitoring and reoperation (as a certainty from the start) and nothing can be done to change that. The other is managed by the valve recipient and his immediate medical team to ensure their AntiCoagulation Therapy is well managed. Generally speaking no other intervention will be required.

It really does come down to just the above in the majority of circumstances.

An anecdote: people here often worry about managing their INR, bringing up what if after what if. So one of the people I assisted managing their INR had had cancer which required extensive chemo. When she was in remission with no statistical likelihood of return of the cancer she told me her doctors said to her it was a good thing she had a mechanical valve because the chemo would have destroyed her tissue and she'd be facing another reoperation. Nobody wants cancer and as icing on the cake another OHS to top it off.

So ... just an anecdote, because cancer is rare.


Anyway, all good 👍

it is exactly all good :)

Best Wishes
 

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