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carolinemc

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to my knowledge (and after some 60 years of prescription to literally millions of patients) the only issues are:
  • if you can or can not tolerate anticoagulation of any type (so called VIII and Xa pathways see this {as well as the caveat mentioned in there about warfarin and other drug metabolism conflicts} and this diagram which shows the factors being inhibited) usually related to blood disorders, Marfan syndrome, desire for pregnancy ...
  • very seldom reported issues of allergy (which is so far only identified as dye in the excipient)
the ideas of genetic testing to determine dose are largely abandoned because you can just commence warfarin and then with iterative cycle of testing and dose adjustment be on target within a week (so far its taken me about that too), although I've read one paper where it was 4 days.

HTH
And if those who get sensitive to warfarin, there are alternatives out there. We had a member who was on warfarin and went on bridge for a medical procedure and when she got back on warfarin, she had a major reaction to warfarin and the doctors had to try another way for her to be on thinner (as we call them), and they found what worked for her.
 

Daniel758

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Speaking of Warfarin and potential patient sensitivity. I chose mechanical and we moved forward. But, I don't recall being tested prior to surgery, to see if I'd have issues with Warfarin. Could the test have been in one of the many blood tests? What happens after surgical implantation of a mechanical valve and they discover a Warfarin issue? What alternative is there? (besides Eliquis which is relatively new). I don't recall seeing this part of the issue discussed. Thanks!
And Pellicle & Chuck - keep up the very good helpful work to many. It is appreciated. You and others, clearly put in much time and effort.

I agree that knowing the possible complications and remedies of discovering a Warfarin issue after implantation should be a consideration and is not really covered much (as far as I know) on this forum.

The other issue I would like to see is consideration of how warfarin may complicate future non-valve issues and possible treatments mechanical valver's may face in their future.
 

Superman

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Grand Rapids, MI, USA
I don't think you're a bad guy Pellicle, I just think that after a decade of over 10,500 postings, you (and your group) are starting to actually believe your own BS.
I don’t think your motives with respect to certain members are as pure as you pretend. You just don’t like the guy and it colors your perspective of what they say. I’m still confused about what exactly you think is BS?

- More open heart surgery is more risky than less open heart surgery. Risk increases with subsequent open heart surgeries. - Agree or disagree?

- The younger you are, the risk of having future open heart surgeries is decreased if one opts for a mechanical valve. - Agree or disagree?

- After a certain age, you probably won’t outlive a tissue valve anyway so might as well avoid warfarin. Agree or disagree?

- There is a middle ground (age) for some folks where the risk of just one more surgery could be a fair trade if it allows you to avoid ACT. - Agree or disagree?

- Some people are just contraindicated for warfarin so they really don’t have a choice. - Agree or disagree?

- Tissue valves in younger people don’t last as long, on average, as they do in older people. - Agree or disagree?

- TAVR is promising, but it’s not to the point where one can confidently say that subsequent replacements will be via TAVR and assume they’ll avoid future surgery. The possibility of future surgery has to be part of an informed decision for a younger patient choosing a tissue valve. - Agree or disagree?
 

pellicle

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I don’t think your motives with respect to certain members are as pure as you pretend. You just don’t like the guy and it colors your perspective of what they say. I’m still confused about what exactly you think is BS?

- More open heart surgery is more risky than less open heart surgery. Risk increases with subsequent open heart surgeries. - Agree or disagree?

- The younger you are, the risk of having future open heart surgeries is decreased if one opts for a mechanical valve. - Agree or disagree?

- After a certain age, you probably won’t outlive a tissue valve anyway so might as well avoid warfarin. Agree or disagree?

- There is a middle ground (age) for some folks where the risk of just one more surgery could be a fair trade if it allows you to avoid ACT. - Agree or disagree?

- Some people are just contraindicated for warfarin so they really don’t have a choice. - Agree or disagree?

- Tissue valves in younger people don’t last as long, on average, as they do in older people. - Agree or disagree?

- TAVR is promising, but it’s not to the point where one can confidently say that subsequent replacements will be via TAVR and assume they’ll avoid future surgery. The possibility of future surgery has to be part of an informed decision for a younger patient choosing a tissue valve. - Agree or disagree?
I'm curious about the answers here...
 

pellicle

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It's important for people coming here during a very stressful and confusing time in their lives to know that the person pretending to be an expert here (you) is giving them advice contrary to what they actually did themselves.
just because I present data that is contrary to what you did does not mean that I should shut my mouth for new patients.

Or is that your aim? Get more people to be at the principles office getting a spanking because you don't like being there alone?

Also, if you think my information is wrong, then simply correct it with valid data. If you read my posts you'll frequently find that my statements are exactly consistent with baseline medical opinion, indeed not just opinion the actual surgical guidelines. The actual guidelines that the actual surgeons should use to advise their clients.

You continue to make assumptions about me and make accusations of pretending to be an expert. Yet I often can be found saying "I'm not an expert". Yet I do have specific knowledge that is in the domain of an expert. You know nothing about me but slander me.

why? sour grapes? I've never questioned your choice or told anyone who has chosen what to pick. If you don't like what I say tap that ignore button ... its pretty simple. I know it helped me seeing only "content from someone you are ignoring" and even then only when someone quotes your post.

I'm calling you a type of hypocrite because you are not to my knowledge an accredited financial advisor and are happy to give financial advice to newwarrior .. also happy it seems to give valve choice advice and run mine down while you are not a medical expert either?

I don't care why you hate me ... its of no interest to me. I do care that you go around scaring others off decisions that will affect and effect their lives. You seem to show no remorse on what damage your advice may give them in the future.

Makes you a bit of a monster IMO.
 

pellicle

Professional Dingbat, Guru and Merkintologist
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My son is super into vintage film cameras
well then, he may find other material on my blog of interest too

I mainly used negative film (in 35mm, 120 and 4x5 sheet) and he may find if he scans (even if he just wants to get a cheap densitometer) some of my posts there interesting too.

Best Wishes
 

pellicle

Professional Dingbat, Guru and Merkintologist
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The other issue I would like to see is consideration of how warfarin may complicate future non-valve issues and possible treatments mechanical valver's may face in their future.
so, I assume you just don't read what I post here (which is fine), so how about:




and

just for starters and then if you are actually interested you can look at some of the thousands of posts where I've spent my time helping mech valvers with their warfarin and what to do.

To be clear I understand that you yourself have a contraindication for ACT, which is of course one of the primary selectors against having a mech valve, but as hard as it seems this is to grasp: I don't write exclusively to you when answering other peoples questions.

So how about you answer Supermans questions (who isn't in my gang, if anything I'm in his gang, but as we aren't schoolboys we don't have a gang) in the above post or , even better, just live and let live and accept that not everyone makes the same decisions.

Lastly, if you somehow think that I or that other mech valvers here think that mech valves are an ideal choice or a perfect choice, then that's a mistake. We are all too well aware that Its a compromise. Its a compromise which to my mind when I made my decision was outweighed by the certainty of reoperation (and that would then be my 4th) with a complex bovine anatomy at my aortic arch (and it turned out an infection which would make the next replacement very tricky.

I think you should read again any posts I write to younger people stating these things carefully and see what you've missed.

You should also observe that "Chucks Gang" (which is hardly a good communication strategy to have taken if you genuinely wanted dialog) also regularly say to patients in the >65yo category that a tissue prosthetic is a very reasonable choice.

I recall reading a post here where the person chose a tissue valve because they were (mis) informed about the dangers of Macular Degeneration and warfarin and bleeding. Turns out their advice was wrong. There are two types of MD and they had the one which was safe. (I never mentioned to them that fact because it would have been unkind and unhelpful)

This is why people should come here and shoot the ideas around ... to learn, to meet people who've been there and done that, to get a fresh (more than a dozen) pair of eyes on the topic.

Its unhelpful to just go around slandering members here and in cases you're just plain wrong, we have surgeons, we have experts ... you just put your "internet blinkers" on and lambast us all.

Best Wishes
 
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Timmay

Grandfather Clock
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I know this sounds crazy - but at this point I am thinking that Daniel might be a "plant" by a big-pharm company in order to discredit those here who are drawing attention to the facts by actually posting real articles with real, accurate, and consistent data. Think about that for a moment - there are definitely big-pharm companies that do NOT want that data known ... because it hurts their business. So - you "nip it in the bud" so to speak. Cut it down and don't let it get any further. You do that by discrediting the people drawing attention to it ... because it's difficult and time consuming to discredit the articles.
 

Daniel758

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I'm kinda new here and I don't see it that way at all.

Stick around for a while.

Did you relay all of your medical facts here on the board and then ask people's opinions?

1. No, I did not relay all my medical facts or ask anyone here for their medical opinion on valve choice before surgery... but I was negatively influenced by reading this board in a way that would have turned disastrous if my Barrett's esophagus/potential future kidney problems were not caught by my doctors before surgery.

From my experience, it seems much wiser to trust your life to a top notch cardiologist and a world class surgeon than to a group of random Internet forum posters. If you don't feel this way, I have no problem with that and I hope that the valve choice of the advising internet poster you trust your life with works out great for you and that you have a long and healthy life with no future problems or surgeries.

For what it's worth, I don't ask fellow shoppers for investment advice while in line at WalMart either, so please take my approach to life decisions with a grain of salt and do what you feel is best for you.

2. Beyond the fact that no poster on this board currently giving valve choice advice is actually qualified to give this advice, you're are kind of making my point that the people here on this board doing so do not always have all the information they would need to properly advise people (even if they were qualified).

So - listening to my cardiologist would have set me up for complete failure. I was told that tissue valves last 15+ years and then when it fails I could just get a TAVR. That is completely untrue. COMPLETELY.

Maybe, maybe not.

Some people here have actually had a tissue valve last longer than 15 years, most probably have not.

Some people will be candidates for TAVR in the future, some will not.

Time before tissue SVD is an individual thing and where you would have landed is not certain, especially without knowing how your body would have reacted to the tissue valve or not knowing yet where the Inspiris Resillia tissue valve will end up on the longevity scale.

Thank goodness that I did not take his advice.

I agree that you were wise not to take advice from your doctor that would likely have lead you to an outcome you were not comfortable with.

So, I'm completely confused as to why you blame them when you never even gave them all the details so that they could list out options appropriately.

I blame no one and I take responsibility for all decisions in all aspects of life. My successes and my failures in life are 100% on me and no one else. I should have been smarter than be influenced by an Internet forum on something as important as valve choice.

Now I am simply warning unsuspecting and vulnerable people like myself at that time that it is probably not wise to take their most important medical advice from an Internet forum because it could lead you into making a bad choice, like it almost did to me.
 

Daniel758

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Next my surgeon was not just some guy picked at random, he was a member of the same surgical team who created and set up the first heart sugery specialised hospital in my state, which went on to become a center for excellence in this area and involved in international training of surgeons. This team (indeed the same primary surgeon) had done my surgery when I was 10 and my surgery when I was 28, so I had good reason and historical basis to trust them. Indeed the surgeon who did my first two surgeries (1974 and 1992) had retired by the time I had my third but the surgeon I was seeing for my third was head of cardiothoracic surgery and directly a student of and groomed by Dr Greg Stafford (I don't expect he's widely known outside of Australia) who did my first two. I spoke with him at length on a few occasions before surgery and was quite comfortable (having had some heart surgery experience and outcomes and post surgical follow up from which to evaluate this) that he was widely read, an excellent practitioner, had my best interests in mind and was accommodating of my desires. Accordingly (given all the above criteria) having only done cursory research about which mechanical valve (not if I was going mech or tissue) I allowed him to make the ultimate choice of valve.

Can you say the same about your team?

Yes.

Dr. Vaugn Starnes, I have things to do today but you can look him up.

So I did not lean towards the ATS, I leaned towards the On-X which my surgeon didn't and I respected his decision. This has been stated here but you choose not to pick that for citation.

I can only go by your own words quoted exactly from your own post (see post above), specifically:

"I leaned towards the ATS. At that time, I had almost no knowledge of the ATS."

If you posted a correction somewhere else, I didn't see it and my apologies.


You choose to cherry pick my replies and put them in a context which was not consistent with how you've couched it in slamming @Chuck C ... nice work ... do you usually major in Bible citation cherry picking?

View attachment 888834

Meme's featuring Lego toys cherry picking Bible quotes?

I know you pride yourself on being a man of "facts and science" so if you somehow think this makes your point or that is this is relevant to anything I posted... okay, I guess... if you say so... plus it's just a pretty great meme.

So I give you a win here with no further debate because what logic or argument could ever possibly stand against such and awesome and powerful meme of a Bible verse picking Lego machine?

It's just too much to overcome.

Well done.


Best Wishes

Same, have a great day and stay healthy and valve issue free.
 

Unicusp

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Joined
Jan 30, 2021
Messages
330
Stick around for a while.



1. No, I did not relay all my medical facts or ask anyone here for their medical opinion on valve choice before surgery... but I was negatively influenced by reading this board in a way that would have turned disastrous if my Barrett's esophagus/potential future kidney problems were not caught by my doctors before surgery.

From my experience, it seems much wiser to trust your life to a top notch cardiologist and a world class surgeon than to a group of random Internet forum posters. If you don't feel this way, I have no problem with that and I hope that the valve choice of the advising internet poster you trust your life with works out great for you and that you have a long and healthy life with no future problems or surgeries.

For what it's worth, I don't ask fellow shoppers for investment advice while in line at WalMart either, so please take my approach to life decisions with a grain of salt and do what you feel is best for you.

2. Beyond the fact that no poster on this board currently giving valve choice advice is actually qualified to give this advice, you're are kind of making my point that the people here on this board doing so do not always have all the information they would need to properly advise people (even if they were qualified).



Maybe, maybe not.

Some people here have actually had a tissue valve last longer than 15 years, most probably have not.

Some people will be candidates for TAVR in the future, some will not.

Time before tissue SVD is an individual thing and where you would have landed is not certain, especially without knowing how your body would have reacted to the tissue valve or not knowing yet where the Inspiris Resillia tissue valve will end up on the longevity scale.



I agree that you were wise not to take advice from your doctor that would likely have lead you to an outcome you were not comfortable with.



I blame no one and I take responsibility for all decisions in all aspects of life. My successes and my failures in life are 100% on me and no one else. I should have been smarter than be influenced by an Internet forum on something as important as valve choice.

Now I am simply warning unsuspecting and vulnerable people like myself at that time that it is probably not wise to take their most important medical advice from an Internet forum because it could lead you into making a bad choice, like it almost did to me.
I'm confused by your response. If you trust no one on this forum, why are you here and why are you a Supporter?
 

Daniel758

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I'm calling you a type of hypocrite because you are not to my knowledge an accredited financial advisor and are happy to give financial advice to newwarrior

I'm a CFA charter holder from my days in Private Equity/Venture Capital.

Again, illustrating that you don't have enough information from my forum postings to even make a correct decision about my financial background, let alone enough information to give me (or others) medical advice.

It would seem best to stick to secondary information/support here and leave the actual nuts and bolts medical advice to real doctors/surgeons.
 

Daniel758

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I'm confused by your response. If you trust no one on this forum, why are you here and why are you a Supporter?

A few reasons before I have to get out of here:

One, I like to keep up with any new improvements/information about valves, etc., I'm especially interested in the Foldax, since I may one day need a replacement valve of my own.

Two, I like to read people's success stories. I also like to give them encouragement or information when I can or where I have some experience or went through something similar. I don't post often because I'm usually very busy and I don't come here every day.

Three, I gained a lot of really useful information about before and after surgery preparations and what to expect going forward. It really allayed a lot of my pre-surgery fears and I felt very confident going into surgery and the recovery process afterwards.

Four, it was nice knowing other people were dealing with the same issues I had and they made it through.

Five, I am a supporter because I'm grateful for the support the forum gave me and I wanted to give back to keep it open for others in the future.


Now, why do I post about Pellicle and his group?

One, I'm not crazy about them pretending to be experts when they are not and sowing distrust with the new person's doctors/surgeons because it could hurt the new people coming and listening to their advice.

When they do this, I call them out.

Two, I grew tired of watching this group bullying and belittling good people and running them off from this forum.

How many disputes have you witnessed in this forum that did not involve Pellicle and/or his group? I can't think of any.
 

Wiles Darkwinter

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Jan 24, 2021
Messages
70
I try to stay out these, but the gravitational pull of this thread has taken me.

I'm not sure what happens psychologically to most readers when they see a post that they don't agree with, but the process for me is pretty simple. I read a thread, engage with what I feel like I need to engage with and then get on with my day. I don't agree with everything I read. If you're an individual who only listens to surgeons, then that's fine. If you're one who likes to get into the weeds and do your own research, that's also fine? Don't engage if you're not interested in the content of people's replies OR just present your own ideas and opinions and move on. I think @pellicle and I have disagreed on a few things on other threads...and that's fine? One of us says something, we read and respond. Agree or disagree, present alternate views if required and then move on?

When Christopher Hitchens appeared on Q&A in Australia with a few religious leaders, he said "As long as we keep having a civil conversation we don't need to keep reminding ourselves that that's what we're doing".

I'm not sure you can classify having strong opinions on topics as bullying. I'd say all the "disputes" that arise are usually due to a communication breakdown. Anyone with any common sense can see that there are pros and cons to both mech and tissue valves. That's why they are both available. Sometimes we have biases and that's okay too! Acknowledging your biases is important for emotional intelligence.

A few thoughts on some stuff I've read throughout the thread:

My cardiologist recommended that I get a tissue valve. At 50yo. Why? Because I am a young, healthy, active adult.

Ummmm ... what?

Yes. You read that correctly. The only reason that I was given for this recommendation was that I was a young, healthy, active adult. That is literally the EXACT reason that I should get a mechanical valve and not a tissue valve. So - listening to my cardiologist would have set me up for complete failure. I was told that tissue valves last 15+ years and then when it fails I could just get a TAVR. That is completely untrue. COMPLETELY. Thank goodness that I did not take his advice.
Re Timmay's point above: I can completely see your point of view here when looking at it from the "likelihood of a redo" angle. It sounds like your cardiologist definitely wasn't taking into account your personal perspective. However for me, I would prefer a tissue valve over a mech valve as a 'young, healthy, active adult', as my lifestyle does not suit warfarin. This is subjective. It DOESN'T mean you can't have an active lifestyle on warfarin. I'm not saying that. In fact, I think @TheGymGuy (who is one of my favourite people on here) has a mech valve and is probably one of the most physically active person on the forum. I think where we go wrong in our communication is people read what I just wrote and respond with "YEAH BUT, look at x, y, z, you CAN have an active lifestyle on warfarin"... and to that I say, yep, you can. Correct. I just would prefer not to. For me, a tissue valve requires zero management, no changes to activity (I'm a climber and spend time at altitude and altitude fvcks with warfarin - Yes it can be managed, but I don't want to) and the risk of blood clots that come with a mech valve for someone like me with a family history of hypertension + an ex smoker of 10 years worries me. Not to mention that the new Inspira Resilia's billion cycle test (about 30 years, or 25 if you adjust for activity levels), looks pretty good and has been recommended by Australia's top surgeons for young fit people. Bias? Yeah probably. I would rather go with new tech.

Here are the interesting excerpts from the post:

July 9, 2014 Pellicle:
Dude - you don't like him, we get it, just ignore what you don't like. It'll be better for your mental health. Just respond to the content, don't stress over @pellicle's character development from 2014 to now. He's fine.


Please be respectful to everyone in here, for we all are in this together. Be nice and polite to others here.
Spot on Caroline.

I hope so. One of my boys may some day need an intervention. So far so good. The longer he can wait the better. Still in mild territory in his 20’s. Hoping for never, but if it’s 10 or 20 years or more down the road, I’d love for him to have a realistic one and done option with no need for ACT. Or especially a truly durable TAVR option. I’m glad they keep working at it.
Superman - I have a 6 month old boy, any advice on early check ups/monitoring of familial aortic issues? Cardiologist seems to think not to worry until he's a bit older?
 

Superman

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Superman - I have a 6 month old boy, any advice on early check ups/monitoring of familial aortic issues? Cardiologist seems to think not to worry until he's a bit older?
I kind of agree with your cardiologist unless you just have to know. So far just our oldest showed anything that might need intervention some day. He was five when we had him checked. My youngest is 10 now and very active in soccer. We plan to take him in next year.

So far a couple of my kids are completely cleared. None have presented like I did. Not one would have been detected by primary care if we hadn’t asked for an echo. I’m sure we still wouldn’t know if it wasn’t for my history prompting a check. I kind of envy that ignorance so many here got to enjoy for so many years. I mean that in the happy, care free way.

Just for comparison, I had a very obvious murmur at birth that remained very present. I was less than a year old and they new something wasn’t right. And that was in the early 1970’s with no family history. From then on it was check ups every six months to a year, heart cath’s, stress tests, 24 hour recording monitors. All kinds of fun.
 
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Unicusp

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Messages
330
A few reasons before I have to get out of here:

One, I like to keep up with any new improvements/information about valves, etc., I'm especially interested in the Foldax, since I may one day need a replacement valve of my own.

Two, I like to read people's success stories. I also like to give them encouragement or information when I can or where I have some experience or went through something similar. I don't post often because I'm usually very busy and I don't come here every day.

Three, I gained a lot of really useful information about before and after surgery preparations and what to expect going forward. It really allayed a lot of my pre-surgery fears and I felt very confident going into surgery and the recovery process afterwards.

Four, it was nice knowing other people were dealing with the same issues I had and they made it through.

Five, I am a supporter because I'm grateful for the support the forum gave me and I wanted to give back to keep it open for others in the future.


Now, why do I post about Pellicle and his group?

One, I'm not crazy about them pretending to be experts when they are not and sowing distrust with the new person's doctors/surgeons because it could hurt the new people coming and listening to their advice.

When they do this, I call them out.

Two, I grew tired of watching this group bullying and belittling good people and running them off from this forum.

How many disputes have you witnessed in this forum that did not involve Pellicle and/or his group? I can't think of any.
Thanks. Understood. I find the forum to be helpful and quick. Much better than the other (Adam) one. I have not interpreted any advice as bullying. Just straight forward no BS advice. Pellicle clearly just wants to help. He surely puts in alot of time and is not getting paid! I appreciated the information I received. Remember that he is from Australia. I've been there and understand how they communicate. No BS and straight forward. Not sugar coated or "politically correct". Me being from NY, I appreciate that style.
As I recall, when my situation escalated my (older) Cardiologist advised "just get a St. Jude". When I asked him his thoughts on the On-X, he said he was unaware of it. My very well known surgeons first advice was "just get the Resilia". When I pressed him about durability and expected life, he said it looked promising but unknown (he was honest). I did not want to look forward to further surgeries in my 70's. If I had not come here and received opinions, I would have possibly made the wrong decision by going by the "experts" who do not have to live with their decision for me.
Those are my thoughts. I try to help others where I can, from my experience. But clearly not at the level of Pellicle! Thanks!
 

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