Tissue Valve

[pellicle]

. I hear too often experiences where people had to, “be their own advocate” to avoid being ignored or actually get the testing that correctly identified whatever their issue is. And it’s not just valve patients. Medical professionals are just people too.

apparently only if you advocate for "the right stuff". But they should not advocate, but should just accept what they are told by their professionals, whom after all are " They are there to give you the best chance possible at the best life possible. "

What to do with differing opinions is vexing, so don't get a second opinion is what I read that as meaning. They are after all unmistaken in all things and we (well me I guess) are (am) just "bloggers".

 

[Lynn]

Before I post this link, let me say I am not “advocating” anything. I am sharing research that others may want to take consider or discuss with their surgeons as I did.
https://www.ahajournals.org/doi/10.1161/JAHA.121.023395
This is a link to a recent study that provides similar results to other studies I read prior to surgery discussing brain lesions following TAVR. From research conducted to date, it seems to be very common. As part of the process of making the very difficult decision between tissue and mechanical I raised the issue with my surgeon. He said it remained a concern with TAVR, and is likely caused by the fracturing of calcification that occurs during TAVR and the difficulty of containing the particles. He told me one of the very important aspects of a SVR is the time and care surgeons take to make sure they safely remove the valve without breaking off pieces of calcification and that none of these pieces ”escape” to travel through the body. He said to me that this is a challenging aspect TAVR i that has yet to be solved and he is not sure how it will be solved in the future.

I was 58 last year which meant that even if I was able to get 20 years from tissue, I would need another surgery or TAVR in my 70’s, and wasn’t keen on brain lesions at that age lol. Maybe the issue will be solved, maybe it won’t. And it is true, we do not yet know the long term impacts of these brain lesions, however we do know brain lesions in other diseases like dementia and MS have devastating impacts.

 

[Lynn]

Further to my post above, I find some of the recent comments on “a normal life”
with a tissue valve a bit prejudicial. What is a normal life? Does it mean someone who doesn’t take any medication? Someone who doesn’t manage any chronic or ongoing health issues? Someone without an open heart surgery in their future?

I see both sides of the mechanical vs tissue debate, it’s a really tough call. But to say those of us that opted for mechanical can’t lead a normal life is, in my opinion a stretch. My life is pretty normal compared to my son in law who takes rejection meds for his kidney replacement, and manages his diabetes. Or my daughter who injects herself daily for MS. They and countless other people managing their personal health situation feel like they lead pretty normal productive lives.

What has a much larger impact on my “normal life” than warfarin, is my mild knee arthritis. Now if someone could fix that… I feel like I would really be normal...

 

[Daniel758]

Having been a valve patient my whole life, this is the part of your post I don’t agree with. They are there to do a job. Often, they go through the routine and figure if it doesn’t harm the patient, it’s fine. But I don’t think for a second they take each individual case into consideration and try to do the best thing based on the merits of that case. I hear too often experiences where people had to, “be their own advocate” to avoid being ignored or actually get the testing that correctly identified whatever their issue is. And it’s not just valve patients. Medical professionals are just people too.

As far as my own experience of being born in the waiting room vs someone who finds out later in life and has to process all of it…. Totally agree with your take. I can’t relate to how that must feel. I’ve often said I only felt relief when it was my time for my first surgery. It was like, “Finally! Let’s get this over with!” I get the distinct impression that’s not the normal response.
[/QU

Having been a valve patient my whole life, this is the part of your post I don’t agree with. They are there to do a job. Often, they go through the routine and figure if it doesn’t harm the patient, it’s fine. But I don’t think for a second they take each individual case into consideration and try to do the best thing based on the merits of that case. I hear too often experiences where people had to, “be their own advocate” to avoid being ignored or actually get the testing that correctly identified whatever their issue is. And it’s not just valve patients. Medical professionals are just people too.

As far as my own experience of being born in the waiting room vs someone who finds out later in life and has to process all of it…. Totally agree with your take. I can’t relate to how that must feel. I’ve often said I only felt relief when it was my time for my first surgery. It was like, “Finally! Let’s get this over with!” I get the distinct impression that’s not the normal response.

No doubt, everyone should ask questions and do their due diligence but at the some point everyone must also decide who to trust and take advice from. And, yes, you do get some bad apples in every organization but I don't believe that world class heart centers like Cleveland Clinic, etc. tolerate those types of staff for long. It's what makes them world class.

I also don't believe, for all the good that Pellicle (who I believe is a computer IT guy by day) does in this forum, that taking his advice over a doctor, say from Cleveland Clinic, is wise or will lead to good outcomes for the vulnerable people coming to this forum trying to deal with their valve issues or upcoming surgeries.

And I've seen multiple vulnerable people over the last several years be convinced by Pellicle and the other the "forum experts" in his group into disregarding or distrusting their doctors advice concerning valve choice. This is dangerous and harmful.

 

[Daniel758]

apparently only if you advocate for "the right stuff". But they should not advocate, but should just accept what they are told by their professionals, whom after all are " They are there to give you the best chance possible at the best life possible. "

What to do with differing opinions is vexing, so don't get a second opinion is what I read that as meaning. They are after all unmistaken in all things and we (well me I guess) are (am) just "bloggers".

I never said not to get a second opinion, that's a straw man argument.

What I said is that people making serious, life altering medical decisions would be better off getting their medical advice from top notch, qualified medical professionals than from a computer IT guy on an Internet forum.

And that it's dangerous to do so.

And not responsible for the computer IT guy to give this type of advice.

 

[nobog]

"Medical professionals have vastly more knowledge, education, expertise and experience than you have to advise and guide patient choices/options."

I don't know about that... Most Drs/surgeons know very little about the actual valve - they are very good at anatomy and at using a scalpel, but - example:

Google "heart valves" and take a look at the images - you will notice some cuffs are flat (completely round) and some have cuffs that are scalloped (wavey).

The theory is for the scallop to match the sinus for an aortic replacement.

So I asked two different Drs. what they think of that:

Dr #1 said yes, you absolutely have to have a scalloped cuff for the valve to align properly.
Dr #2 said no, round is just fine - the cuff gets flattened out and goes where it wants too anyway.

We know after millions of implants it really doesn't matter - yet the marketing people will continue to propagate whatever is their current offering.

 

[pellicle]

I never said not to get a second opinion, that's a straw man argument.

sadly it is not a straw man argument it is what is implied by you saying don't ask here. You failed to address my point about "what if there are conflicting advices" from medical professionals ...

What I said is that people making serious, life altering medical decisions would be better off getting their medical advice from top notch, qualified medical professionals than from a computer IT guy on an Internet forum.

you appear to know very little about me and are yet willing to run me down, you seem to not understand the word veracity and failed to even engage with my points about where I source my views from or to seek justifications for my interpretations. Probably this is because is all too complicated for you to properly understand as you normally don't engage in academic critical thinking.

I had suspected you were not genuine in your praise of me but were setting up to hide poison in your softer words. You are disingenuous and offensive in your comments about Dick.

And not responsible for the computer IT guy to give this type of advice.

Your attempt to denigrate me based on my career is noted (funny you talk about logical fallacies, this is a classic style and the lowest ad hominem). However just because I am qualified in my field does not mean that I can not learn about other things (unlike yourself). The very basis of doing a masters degree (which wasn't in IT btw, but a branch of science) is to learn how to teach yourself about an academic topic to the satisfaction of your peers. I have a number of degrees (two undergraduate and one post graduate) and am quite able to educate myself on a topic. So that when I discuss things with medical specialists they don't eye roll , they engage and we discuss it. I do not pretend I can be a cardiologist, but I do know that on specific topics I can engage as an equal.

Also unlike yourself I address points and seek clarifications (one of my points above that you also ignored). So I propose that you tick some of these boxes:

1. a person with a conflicted decision who's unconscious is doing its best job to push the truth to you and that unsettles you
2. do not like adults discussing things as adults
3. sufficiently low intelligence to grasp what is being discussed and actually understand it or its source materials
4. an emotional thinker who is unable to engage with rational scientifically based discussion of point
5. unable to think critically

You start by offering nice words, then continue to slam me and then take a swipe for no reason at all at another. This makes you a pretty unhelpful person who seems more content to detract and confuse than engage and assist.

I understand from your bio that you 'flip houses' and so perhaps know more about marketing and sales and making money than you do about science or critical analysis. No matter, but in that case why not recognised "you are playing out of your depth". For example back some time ago you posted this:
https://www.valvereplacement.org/threads/aortic-valve-choices.887840/post-907737
which is an opinion piece, yet you made no attempt to even grapple with (in your point order)

1. what "long term" means
2. explain or even suggest you understand what mid term morbidity means
3. what 'low' means and how it was compared to

so you were doing exactly what you say not to do : offering advice in a manner similar to me (but you cite opinion pieces instead of journal research).

This makes you a not just a hypocrite, but an insulting one attempting to diminish what others say without turning that lens on yourself, and probably Dunning Kruger fool. You provide nothing helpful and indeed started by supporting the posts of a guy how also provides nothing helpful. Birds of a Feather I say.

I hope you find the evidence in the sales brochures and promotional materials from the makers that you educate yourself with to satisfy your need for confirmation on your choice.

Good day to you sir

 

[pellicle]

to anyone reading a point worth exploring is to ask "why are you here"?

Seeking comfort or growth?

I think Rachel is onto something there.

 

[Chuck C]

And I've seen multiple vulnerable people over the last several years be convinced by Pellicle and the other the "forum experts" in his group into disregarding or distrusting their doctors advice concerning valve choice. This is dangerous and harmful.

From my observations, Pellicle is meticulous is supporting his positions with evidence- whether from the medical literature or from his own anecdotal personal experience.

On the other hand, you have not demonstrated even a shred of his caution to support your views with evidence. You once said this about the new tissue valves:

“According to surgeon and research, the valve’s supposed to last 2-3 times longer than previous generation tissue valves, and minimizes calcification.”

That is totally misleading statement which is not supported by the evidence at all. If a surgeon truly told you that the new valves are supposed to last 2-3x as long as the previous generation, and I'm doubtful that one really did tell you that, he was not guided by the research. It is folly to say such a thing when there is only 5 years of published human data. Your "research" also led you to this conclusion? Good heavens.

When you make such reckless statements, you seem taken aback when you get pushback. I'm grateful that this is a board that values evidence based information. Dubious claims about valves, whether tissue or mechanical, will get a response. You have done this in the past and appear to get offended and lash out at others when they challenge your unsupported views.

 

[Chuck C]

With all due respect, this is exactly what you and your handful of mechanical valve oriented posters routinely do when you/they tell people your/their life experience of one experience/one case trumps thousands of cardiologists, surgeons, their support teams, hospitals, clinics, valve makers, etc. with their combined education, research and experience dealing with tens or hundreds of thousands of cases

What you're doing is creating a false dichotomy of "either/or". One can seek input from medical professionals and also one can learn from the wisdom of others who have faced the same decisions that they now face, and from hearing about how their life has been in living with those choices.

 

[pellicle]

is meticulous is supporting his positions with evidence- whether from the medical literature or from his own anecdotal personal experience.

thanks, but above and beyond anything else to make such a nasty passive aggressive attack on Dick is to me unconscionable and belies a nasty mind. To take what happened to him and twist that into calling him one eyed is just about the worst moral display I've seen here.

 

[dick0236]

........... to make such a nasty passive aggressive attack on Dick is to me unconscionable and belies a nasty mind. To take what happened to him and twist that into calling him one eyed is just about the worst moral display I've seen here.

Thanks for taking up for me Pel. Actually, Dan is incorrect. I am not one eyed......I lost vision in ONE HALF OF BOTH EYES. By all standards, Dan is a "newbie", only 3+ years out of surgery and you have to "cut him some slack". He sounds, to me, like a person still coming to terms with his new valve.

ps to Dan, I hope you have half the luck with your Edwards Lifesciences Tissue valve as I've had with my Edwards Lifesciences Mechanical valve.....who knows??

 

[Superman]

Thanks for taking up for me Pel. Actually, Dan is incorrect. I am not one eyed......I lost vision in ONE HALF OF BOTH EYES. By all standards, Dan is a "newbie", only 3+ years out of surgery and you have to "cut him some slack". He sounds, to me, like a person still coming to terms with his new valve.

ps to Dan, I hope you have half the luck with your Edwards Lifesciences Tissue valve as I've had with my Edwards Lifesciences Mechanical valve.....who knows??

“The light man’s blind in one eye;
and he can’t see out of the other.” - Tom Waits, The Piano Has Been Drinking (Not Me)

 

[Chuck C]

Thanks for taking up for me Pel. Actually, Dan is incorrect. I am not one eyed......I lost vision in ONE HALF OF BOTH EYES. By all standards, Dan is a "newbie", only 3+ years out of surgery and you have to "cut him some slack". He sounds, to me, like a person still coming to terms with his new valve.

ps to Dan, I hope you have half the luck with your Edwards Lifesciences Tissue valve as I've had with my Edwards Lifesciences Mechanical valve.....who knows??

"In the land of the blind, the one-eyed man is king."

Desiderius Erasmus's Adagia (1500)

Some days this does feel like the land of the blind, and Dick, I think you'd make a pretty good king, even if techically you're not one-eyed.

 

[pellicle]

In the land of the blind, the one-eyed man is king."

https://cjeastwd.blogspot.com/2013/11/long-live-king.html

 

[vitdoc]

As a medical professional having done surgery for many years I sort of find it interesting that lay people think that what surgeons suggest is always optimal. First we are governed by our own experience, where we trained and hopefully continued review of the medical literature. We attend meetings and conventions and read journals. First it is sort of assumed that most medical questions are answered by studies. Unfortunately there are many questions that good studies are not available for. Studies can be influenced by where and who did them by bias based on patient population in the study and innumerable other factors. Studies provide guidance but they often are not definitive. There are studies on various valves but are there studies over many years of sequential treatment? For example what happens in patients who have a bio prosthetic valve and then go on to TAVR? There might be a few small studies but not yet a large well done definite study.

Equipment manufacturers bombard us with "detail" people who try to influence our choices. For example the idea of low INR levels as touted by the ON-X company is pounded into everyone's thinking. Each institution has it's own culture and ways of approaching how to do things. The Mayo clinic may do things a bit differently then the Cleveland clinic. And each surgeon in an institution may do things differently than their colleagues.

I think that a good physician should be aware of these influences and try to paint an accurate picture as possible to the patient what the limitation of our knowledge is and what we feel is well established and clearly defined.

As I have said previously if there was an obvious approach to a medical issue than everyone would be doing it. The fact that there are multiple approaches just means that they all have their pros and cons and each doctor and patient needs to make the best decision AT THE TIME.

When I had my third open heart due to an aortic aneurysm at age 58 I had a choice of a bioprosthetic valve or another St. Jude. The surgeon said you don't want someone in your chest a forth time. So I had a St. Jude placed. I heartily agreed with that since I am not a fan of heart surgery. This was before TAVR was available. As I have also said EVERY PROCEDURE HAS RISK so as a general rule fewer is better. Warfarin has risk. So pick your poison.

Also in regard to Dick he probably had an Occipital stoke if he lost inferior field in both eyes simultaneously. This most likely was from an embolus from the valve most likely due to inadequate anticoagulation. Today with self testing this would be much less likely. So things do change with time. Maybe the Foldax valve will work out and solve many of these issues but we won't know for many years.

 

[Superman]

Some of this reminds me of a buddy of mine. He’s a big fan of the movie, “Fast Times at Ridgemont High”. Knows all the famous quotes and a lot of the less well known funny bits. For whatever reason, that’s his thing. Can’t quote many other movies. He always says his knowledge is deep, but not broad.

Sean Penn was in the movie. I would not be surprised if my friend could quote more of the movie than Sean Penn. My friend can’t act. Wouldn’t get a part in any other production. But he knows a lot about that movie. Penn has long since moved on and has had an extensive career in acting. That was just one movie he did when he was young.

Even though many of us aren’t doctors, we can read and know a lot about our specific situation. Until recently it was difficult to even find a cardiologist that specialized in adults with congenital heart defects. I’d bring up studies or issues I’d read about that my cardio would have to look into and get back to me.

I’m not saying anyone here is a doctor (although some are). But to dismiss the experiences and knowledge of board participants as just a bunch of internet knuckleheads that don’t know what we’re talking about is a bit extreme as well.

People here are just sharing their experiences and answering questions about how we dealt with decisions and situations that new folks are facing. What they do with our experiences and how they apply to them, that’s ultimately their decision.

 

[Mister_James]

Let's be absolutely clear.
We value our doctors advice (and when we doubt them, we get another doctor to confirm, a second opinion).
What we have in this forum is "lived in" experience. While we agree that people are different, they do have some valuable nuggets to share.
We have tissue valvers who have gone 15+ years BUT we have more who say "I thought it would last..."
We have people who say I opted for tissue because I wanted a normal life and we have mechanical valvers who say "My life is pretty much normal other than I had to quit the NFL."
I have read people who shake their fists at Metoprolol, yet I pop mine 7 years in without issues.
There is nothing wrong with çlistening to people" and taking your advice primarily from your doctor.
If people truly took their doctor's advice, there wouldn't be a debate over many medical issues but some doctors advice requires a question. If a doctor tells me INR of 1.5 is okay for my valve, I would ask him if INR of 1.0 is also fine because I know my INR has swung from 2.0 to 4.6 without much effort from me. Would I be testing every other day or every other week or once a month?
This is the well worn advice I have gathered from this forum.

 

[dick0236]

..........Also in regard to Dick he probably had an Occipital stoke if he lost inferior field in both eyes simultaneously. This most likely was from an embolus from the valve most likely due to inadequate anticoagulation. Today with self testing this would be much less likely. So things do change with time. Maybe the Foldax valve will work out and solve many of these issues but we won't know for many years.

Vitdoc is correct with his diagnosis......and the stroke would NOT have occurred if I had known then what I know now. In the 1970s little was known about anti-coagulation treatment for mechanical valve patients.....nor was there a system (INR) for correctly measuring "blood thinners". I might add that the three days I spent in the hospital after the stroke in 1974 was the LAST time I've been an inpatient in a hospital.......for ANY reason. I have a mechanical valve because they were the only type available in the 1960s........and thank "my lucky stars" for that.

 

[Chuck C]

Even though many of us aren’t doctors, we can read and know a lot about our specific situation

I’m not saying anyone here is a doctor (although some are). But to dismiss the experiences and knowledge of board participants as just a bunch of internet knuckleheads that don’t know what we’re talking about is a bit extreme as well.

Excellent post and great points!

In my view, it really comes down to being your own medical advocate. In trying to live this out, I would include the following:

-Seeking the input from medical professionals, seeking 2nd and 3rd opinions whenever needed.

-Listening to people who walked the walk- lived life having made these choices. Learning about, not only their approach to these choices and why then made the choices, but also how they feel about their decisions now and how they deal with issues that they may face. This board has been an incredible resource for me in this regard.

-Reading the medical literature for myself. I do have some training in this, as do many here. It would not be accurate to say that only doctors and researches should dare read the medical literature. Approach with caution, knowing full well your personal limitations, but do your best to put on your critical thinking cap and take in as much as you can, if you are so inclined. If nothing else, it will equip you to ask more informed questions from your medical professionals.

The above sources of information are not mutually exclusive in terms of shaping how we approach the decisions before us and how we live with our conditions.

It is up to each individual to take information from all of the resources that are available and make the most informed decisions possible for their own circumstances.