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pellicle

Professional Dingbat, Guru and Merkintologist
Joined
Nov 4, 2012
Messages
10,756
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Queensland, OzTrayLeeYa
One, I'm not crazy about them pretending to be experts
How are you sure you're not actually the one that's pretending, and that I am actually correct in my claims?

Could be you that's the dickhead here mate, pretending that your valve is going to last three times longer and exaggerating things.

Maybe it's just that I hate bullschit and bullschitters like you?
 
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pellicle

Professional Dingbat, Guru and Merkintologist
Joined
Nov 4, 2012
Messages
10,756
Location
Queensland, OzTrayLeeYa
Pellicle clearly just wants to help.
Thanks for going in to bat (a cricket saying) for me mate, that's very kind of you. However you're wasting your breath because Daniel is just an irrational hater.

I suspect he hates me because part of him knows that what I'm saying is correct (and after all, when I discuss stuff I support my view with actual medical literature (not just my surgeon said this, or my cardio said that or my mum said something else)).

Daniel has reported here he initially wanted a mech valve but his surgeon talked him out of it for reasons which would appear to be flimsy (maybe they aren't). He is unaware that things can be managed and just swallowed the koolaid on how horrible and unmanageable warfarin is (despite the building wealth of evidence to suggest that its actually not a show stopper (nor has it been for over 50 years now).

I believe that he does this because he sees that his decision was polluted by the advice of a doctor. He does every mental contortion possible to basically say "just believe your doctor" ... which is as much as saying "don't ever get a second opinion" . What if they conflict?

His unconscious is tapping him on the shoulder and saying "hey" but his ego is doubling down on a lie because he simply doesn't want to face the possibility of "perhaps I got the wrong advice". I've tried to avoid saying this because it goes against my views, but as this fool keeps just attacking me (and others) and calling all of us stupid and pretend experts he's missing the elephant in the room.

He probably thinks of Adam Pick as an expert (when he's just a shameless shill and sucks up to specific surgeons).

Anyway ... hat tip for trying mate

hatTip.gif


Oh and Dan, do rant on as much as you like, I won't see it because you're in the dustbin of happiness.

since you hate what I write so much, do your self a favour and put me in there and stop pissing everyone off. Move on lad.
 
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carolinemc

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Joined
May 31, 2010
Messages
1,315
Location
kansas city, mo
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.
When I was preparing for my second bypass with aortic valve replacement, it was already decided on the St. Jude's leaflet valve. I came here to help keep sane during the wait the time for the surgery, made plenty of friends and help here. Then a few years later, had the money hardship and was off the internet for 2 years. Then came back as me. I started here in 2001 and have never really left, even with the 2 years absence. But I learn a lot and share what I know from experience, for medical science moves quite quickly at time to keep up. But always trusted my Cardios, not all are professional, and some have terrible bedside manner. But I am still alive, not always trusting all doctors, but have had better luck the last 5 years.
 

carolinemc

Well-known member
Joined
May 31, 2010
Messages
1,315
Location
kansas city, mo
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.
No one is being scared by the advice from here. They do listen to the doctors they do trust.
 

Daniel758

VR.org Supporter
Supporting Member
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Apr 24, 2018
Messages
82
Location
California
This forum is support group. Everyone needs to do your own research. You need to go into surgery with plan A, plan B, and plan C. My tissue valve turn 11 years this month.

Rebecca,

Congratulations on your 11 year anniversary and thank you for reminding us this is a support group.

I went back and read a thread you commented on from 2012: tissue vs mechanical with simply name, age, type of valve chosen and occasional comment. Nothing more.

What a respectful group and powerful read.
 

DJ-Rae09

Well-known member
Joined
Apr 26, 2022
Messages
90
In my experience of valve choice...
My surgeon and cardiologist never pushed me down a particular path. They gave me the facts, pros and cons of each valve. The decision was mine as I have to live with it (as many folks have said here).

My original surgeon said meet with the ROSS surgeon down in Melbourne (I live in Sydney) even though he knew my aorta might be big for ROSS, he said meet with him anyway and get his view so I did. And yeah, he said my aorta was to big for ROSS.

My surgeon advised when you've made a decision come back and see me. I never felt pressured to which valve I should choose.

In the end I went with mech based on my age (43), durability and superior freedom of a redo.
If tissue had the same or better durability and freedom of redo, then I would have gone tissue.

@pellicle doesn't get paid for the amount of time spent helping folks here (including me) with INR self management if they chose mech.
He is genuinely interested in helping people get through OHS, after all he's had 3 of em!

This forum has been a tremendous resource of information and support, the best I have found online.
And gave me the sense that I'm not the only one going through this.
 
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pellicle

Professional Dingbat, Guru and Merkintologist
Joined
Nov 4, 2012
Messages
10,756
Location
Queensland, OzTrayLeeYa
In my experience of valve choice...
...
This forum has been a tremendous resource of information, the best I have found online.
And gave me the sense that I'm not the only one going through this.
thanks for the supportive voice there mate, but I'm afraid that Aho will think in partisan ways and you'll no be judged by dipps like Daniel as being "part of my gang".

I was reticent to drag you deeper and do anything to fuel that.
 

sharky7

Well-known member
Joined
Mar 17, 2015
Messages
104
Location
SOUTH FLORIDA
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.
WOW, you sure know some very fancy words, and articulate very well for someone that happens to enjoy pouncing on others! I dont give a rats butt why, fact is you are still here, and abusing, i think, more than your share! pass some others this way, and i will also do some abusing! A old man like me would use the term, talking out both sides of ya mouth, which i happen to think applies here! Cause for one very simple reason, and even you can comprehend the meaning, that is exactly what you are doing! And I would also add the fact that you are a liar!
You may go now, I am done with you!
I respect this place for its people here, and for what and how they all treat everyone with respect, and have never run "them off from this forum", and never would! We are all humans, and are not perfect in anyway shape or form, and there is no one here that would make that claim that they are perfect, that they know everything! If there was anyone here that did not fully understand what anyone here was saying, in the least they could and should ask whomever to explain further if that is possible. If anyone here has taken any information here and taken it for more then it was meant for, then that is on them, and there is nothing that anyone can do about that! "i have nothing more to say about that"!!!
[WOW-i would bet that his IQ is way above average!]
 

pellicle

Professional Dingbat, Guru and Merkintologist
Joined
Nov 4, 2012
Messages
10,756
Location
Queensland, OzTrayLeeYa
I respect this place for its people here, and for what and how they all treat everyone with respect, and have never run "them off from this forum", and never would!

I would agree with all this. Some years back I was site administrator for a University Student Web Portal. It was always our intention to guide conversations which were becoming emotionally charged or abusive back towards the content of the message and not attack the messenger.

If someone disagrees with something then they should argue the point with logic and reasons, not degrade the speaker.

Changing the subject a bit I find that when a thread has gone on to its 5th page and the original poster is no longer involved then its pretty much spent and its best left ... so I'm going to follow my own advice.

Best Wishes
 

Daniel758

VR.org Supporter
Supporting Member
Joined
Apr 24, 2018
Messages
82
Location
California
I would agree with all this. Some years back I was site administrator for a University Student Web Portal. It was always our intention to guide conversations which were becoming emotionally charged or abusive back towards the content of the message and not attack the messenger.

If someone disagrees with something then they should argue the point with logic and reasons, not degrade the speaker.

Changing the subject a bit I find that when a thread has gone on to its 5th page and the original poster is no longer involved then its pretty much spent and its best left ... so I'm going to follow my own advice.

Best Wishes


Well I see you guys got the tears out, had a nice group hug and moved on, congratulations!

So where was that post where you likened yourselves to Clint Eastwood in Gran Torino again?

1666802703774.png



Too funny!

Have a good day fellas and stay safe
 

Superman

Well-known member
Joined
Oct 2, 2009
Messages
1,712
Location
Grand Rapids, MI, USA
it may take a while yet, Daniel, but eventually it will dawn on you:

4426FA20-B116-47EB-AF76-BB7479E60047.jpeg


Your singular focus on one well respected member of the forums appears borderline obsessive. You may not see it that way. I’m just telling you how it looks. Probably best to let it go and participate in your own way. Let the moderators deal with things outside the rules of the forum. If they aren’t outside the rules and just personal disconnects, best to ignore it.
 

Timmay

Grandfather Clock
Supporting Member
Joined
Apr 22, 2022
Messages
136
Location
Frederick, MD
... 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.

But why would anyone not listen to what their doctor has to say?! That is your premise here and that is a huge disconnect for me. Where did you ever get the impression that someone shouldn't listen to and communicate with their doctor?! That's insanity. I am completely dumbfounded that you would assume that people would go to their doctor and not communicate with them ... and demand a certain valve :eek:🤷‍♂️. I'm flabbergasted that you, sir, would ever do something like that. Nobody ... and I mean NOBODY on this forum advocates not communicating with your doctor(s).

You came here and you got facts. Mech valve is the choice for younger, active people where warfarin is not contraindicated. Why? Stereotypically speaking, Tissue valves degrade and Mech valves do not. More open heart surgeries increase mortality.

As it turns out, you're contraindicated for Warfarin so no Mech valve. Easy peasy. Done. Yet you're here turning this into some huge thing based off of your unbelievable and inaccurate assumption that people here are saying don't communicate with your doctor.

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.

Agreed. Wholeheartedly. Nobody said not to. Only you. If you take the facts that are presented here and be your own doctor while ignoring and not communicating with your medical personnel then that is just insane.

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.

Agreed. You were influenced based on bad assumptions ... assumptions that you made ... and then turned around and attacked people here that are linking facts and figures. Nobody ever said to ignore and not communicate with your doctor. In fact, what you will find, is advice over and over to bring in MORE doctors and get second and third opinions.
 

carolinemc

Well-known member
Joined
May 31, 2010
Messages
1,315
Location
kansas city, mo
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.
And there have been people in my life, that thought that murmur means immediate surgery. I, also was born with a murmur, of the aortic valve and had repair in 1973, bypass was still experimental on children in the way it was done back then. Years later I had St. Jude's leaflet valve to replace the aortic valve. So happy I did that, at 36 years young, so not ready for another just yet, for I now developed Calcification of the Mitral Valve. But that is from time. Bound to happen to us at some point. So glad your kids got checked, for heart problems can happen at any age. Good luck with the kids and keep up with the information, for research on heart defects and disease is ongoing.
 

Daniel758

VR.org Supporter
Supporting Member
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Apr 24, 2018
Messages
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Location
California
it may take a while yet, Daniel, but eventually it will dawn on you:

View attachment 888858

Your singular focus on one well respected member of the forums appears borderline obsessive. You may not see it that way. I’m just telling you how it looks. Probably best to let it go and participate in your own way. Let the moderators deal with things outside the rules of the forum. If they aren’t outside the rules and just personal disconnects, best to ignore it.

Superman, I'm impressed, a good movie and an effective use of a meme.

Pellicle, you should take notes.
 
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