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carolinemc

Well-known member
Joined
May 31, 2010
Messages
1,315
Location
kansas city, mo
Thanks for repeating exactly what I said. Did you not read my post?

I literally listed conditions that would require someone to choose a tissue valve. And then you quote my response and ask me to contact doctors that would tell me what I just said.

Please read before replying.
Please be respectful to everyone in here, for we all are in this together. Be nice and polite to others here.
 

Daniel758

VR.org Supporter
Supporting Member
Joined
Apr 24, 2018
Messages
82
Location
California
"One positive is that you're in Thailand and living expenses are low and even a relatively small amount of reserves could get you by. My best advice is find a good financial advisor to help you invest what you have left or simply buy into an income fund such as JEPI (NYSE) that should give you a pretty reliable dividend." My investments are good--I get dividends plus interest and am also invested in value stocks..I have a diverse portfolio and have a leading VP from Morgan Stanley who has helped me a lot + I manage some on my own..Correct my expenses are low in Bangkok but my quality of life is high....I have always been frugal and lived simply and wisely. My only errors were not buying a home stateside years ago AND not developing a career...I am working hard to get new job, rebranding myself and seeking additional education as well as working my Linkedin like a maddog)..I also get occasional work as an actor and have done remote English teaching to China
Hello Newarrior,

I said you mismanaged your resources because you use your investments as your main source of income and, as such, your portfolio should have been set up as very risk adverse, income generating and hedged against a downturn... and it wasn't... as proven by your substantial investment losses and loss of income.

Here's my reasoning:

In a previous post, you said you expected your investments to double in value in 3 years but, instead, they have taken severe losses.

1. Any investment portfolio set up to double in 3 years (targeting a 20% plus annual return) is inherently risky and is geared toward asset growth and not income generation. You should avoid these types of investments in the future if you want to protect your income.

2. The fact you took severe losses shows your investments were not properly hedged to protect against a downturn.

If your VP from Morgan Stanley advisor was aware you used your investments as your main resource to fund your living expenses and set up you up with unhedged, growth investments with such high exposure to downside risk instead of safe income generating investments, he/she did you a great disservice and you should probably look for a different, more conservative advisor.

(I suspect he/she was probably churning your account to get his fees/numbers up. Good for him but not good for you. You would not be the first person this has happened to.)

Good luck in taking charge of your life and getting through your surgery with flying colors.

Daniel

P.S. Also, sometimes getting kicked in the teeth by life sets you on a better path. When I was young and dumb, I did some things that led me to living in an old roofing truck in the dead of winter in the Washington DC area with nothing but a small tub of dry oatmeal, a can of King syrup and the dirty carpet of the truck pulled up from the floor boards to keep me warm. That changed my attitude toward life pretty quickly.
 

Daniel758

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Supporting Member
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Apr 24, 2018
Messages
82
Location
California
No, but perhaps he stayed at a Holiday Inn Express last night.


Chuck,

It's interesting how group think here has evolved into you and your group believing posters such as yourself and your small group have as much knowledge as doctors and surgeons and that readers should take your medical advice/knowledge as equivalent to their medical professionals, especially with valve choice ("understanding your options", "informed decisions", etc., etc.).

Since Pellicle is your unofficial "guru", he's been here the longest and he seems like a pretty knowledgable guy, I thought I'd look at some of his early posts on this forum/his blog and see if his ideas have changed and, not surprisingly, they have.

You should have a look at his early posts and blog for yourself.

I don't have the exact quotes but his early posts/blog were filled with "trust your surgeon", "no matter how much research we do, we'll never have as much knowledge as our doctors/surgeons", "knowing not a fraction of what your surgeon knows", etc. etc.

One particular post was especially interesting since "being informed" on your valve choice is a must for your group and relying on your surgeon to choose which valve is best for you is considered insanely ignorant and worthy of ridicule.

Here are the interesting excerpts from the post:

July 9, 2014 Pellicle:

"I guess it depends if the valve choice you have made (knowing not a fraction of what your surgeon knows)...

"In my case I made it clear to the surgeon that I first trusted him and second I leaned towards the ATS. At the time I had almost no knowledge of the ATS. As it happens I think I got the best outcome."

So Pellicle himself leaned towards a valve he "had almost no knowledge of" and he trusted his surgeon to make the final choice based on the surgeon's superior knowledge?

To quote Vizzini from the Princess Bride, "Inconceivable!"

Can you imagine what a poster coming to this forum today and saying the exact same thing would be subjected to?

What's changed since Pellicle's early posts, other than your group telling and retelling each other the "facts" until you now you actually believe you're as knowledgable or capable as your cardiologists and surgeons?

Bottom line is that you guys may be somewhat knowledgable but you are in no way as knowledgable as actual doctors and surgeons and you shouldn't pretend to be so to readers as you could do them harm by causing them to distrust their doctors or make bad decisions based on your limited knowledge/beliefs and not their cardiologists/surgeons advice based on the reader's unique medical situation.



P.S. This is not hypothetical either as it almost happened to me.

After reading this forum, I was certain that a mechanical valve was the best choice when, in reality, I have Barrett's Esophagus, which causes occasional bleeding and would have been a nightmare on warfarin, I have borderline kidney function which warfarin would have made worse, a family history of Parkinson's which makes the early years more valuable to me than later years or the fear of another surgery and a lifestyle that is not conducive to me being on warfarin (example. I suffered a concussion earlier this year doing what I love that the doctor said could have done me in if I had been on warfarin).

Your small group goes around telling people that being on warfarin is not a big deal and won't be an issue in their lives in the future when you have no idea if that is true or not. You have no idea what their individual situation is now or in the future.

And as to the future, as mechanical valvers like to say, a mechanical valve is not what will kill the heart patient, it will be something else, which is true...

But how many of these future "something else's" will be untreatable, complicated or worsened by being on warfarin and which patients would be more likely to have these conditions in the future?

You and your group have no idea but a doctor or surgeon, with their experience and expertise AND the patient's full medical history and lifestyle information in front to them may.

So let the doctor's/surgeons inform and advise the future valver's what their best valve option is and what their individual risk from warfarin is now and in the future.
 

Timmay

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

It's interesting how group think here has evolved into you and your group believing posters such as yourself and your small group have as much knowledge as doctors and surgeons and that readers should take your medical advice/knowledge as equivalent to their medical professionals, especially with valve choice ("understanding your options", "informed decisions", etc., etc.).

Since Pellicle is your unofficial "guru", he's been here the longest and he seems like a pretty knowledgable guy, I thought I'd look at some of his early posts on this forum/his blog and see if his ideas have changed and, not surprisingly, they have.

You should have a look at his early posts and blog for yourself.

I don't have the exact quotes but his early posts/blog were filled with "trust your surgeon", "no matter how much research we do, we'll never have as much knowledge as our doctors/surgeons", "knowing not a fraction of what your surgeon knows", etc. etc.

One particular post was especially interesting since "being informed" on your valve choice is a must for your group and relying on your surgeon to choose which valve is best for you is considered insanely ignorant and worthy of ridicule.

Here are the interesting excerpts from the post:

July 9, 2014 Pellicle:

"I guess it depends if the valve choice you have made (knowing not a fraction of what your surgeon knows)...

"In my case I made it clear to the surgeon that I first trusted him and second I leaned towards the ATS. At the time I had almost no knowledge of the ATS. As it happens I think I got the best outcome."

So Pellicle himself leaned towards a valve he "had almost no knowledge of" and he trusted his surgeon to make the final choice based on the surgeon's superior knowledge?

To quote Vizzini from the Princess Bride, "Inconceivable!"

Can you imagine what a poster coming to this forum today and saying the exact same thing would be subjected to?

What's changed since Pellicle's early posts, other than your group telling and retelling each other the "facts" until you now you actually believe you're as knowledgable or capable as your cardiologists and surgeons?

Bottom line is that you guys may be somewhat knowledgable but you are in no way as knowledgable as actual doctors and surgeons and you shouldn't pretend to be so to readers as you could do them harm by causing them to distrust their doctors or make bad decisions based on your limited knowledge/beliefs and not their cardiologists/surgeons advice based on the reader's unique medical situation.



P.S. This is not hypothetical either as it almost happened to me.

After reading this forum, I was certain that a mechanical valve was the best choice when, in reality, I have Barrett's Esophagus, which causes occasional bleeding and would have been a nightmare on warfarin, I have borderline kidney function which warfarin would have made worse, a family history of Parkinson's which makes the early years more valuable to me than later years or the fear of another surgery and a lifestyle that is not conducive to me being on warfarin (example. I suffered a concussion earlier this year doing what I love that the doctor said could have done me in if I had been on warfarin).

Your small group goes around telling people that being on warfarin is not a big deal and won't be an issue in their lives in the future when you have no idea if that is true or not. You have no idea what their individual situation is now or in the future.

And as to the future, as mechanical valvers like to say, a mechanical valve is not what will kill the heart patient, it will be something else, which is true...

But how many of these future "something else's" will be untreatable, complicated or worsened by being on warfarin and which patients would be more likely to have these conditions in the future?

You and your group have no idea but a doctor or surgeon, with their experience and expertise AND the patient's full medical history and lifestyle information in front to them may.

So let the doctor's/surgeons inform and advise the future valver's what their best valve option is and what their individual risk from warfarin is now and in the future.

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

What I see are individuals that are encouraging the discovery and reliance on facts. I haven't seen anything where they want or desire anyone to take their advice over a doctor's advice. I don't see where you are pulling that from. Rather, they want the individuals here on this forum to do due diligence and invest the time to educate themselves on their situation and the best option for happiness and longevity. And isn't that the best thing to do? Educate yourself ... and then in collaboration with your physician / surgeon to make a decision that is best for a long and healthy life.

I don't see where you're getting your ideas about your situation? Did you relay all of your medical facts here on the board and then ask people's opinions? Because it is well known and documented that chronic bleeding (especially esophageal) is a contraindication to Warfarin. Nobody is going to recommend you take Warfarin with that condition.

And to say that doctor's always know the best is - honestly - ridiculous. Many, in fact, do know the best (they better right?). But many, in fact, do not. The number of malpractice cases here in the USA is absurd. Since you provided your personal experience, let me provide mine ...

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.

So there you have it. Your experience of trusting your doctor ... and my experience of trusting my doctor (not). Your experience of trusting your doctor is spot on. Anyone in your situation that is contraindicated for Warfarin can't get a mechanical valve. Of course. I'm sure that Chuck and pellicle would agree since they are fact based. 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. Just makes no sense to me.
 

dornole

Well-known member
Joined
Jan 5, 2014
Messages
876
Location
Minnesota, US
Don’t people come here to get opinions and see how others reasoned through their choices? Or shared their experiences? What would be the point of a forum where people just said “ask your doctor?” I think people read this to get an idea WHAT to ask and what the factors might be driving a doctor’s recommendations. This helps bridge the communication gap between patients and doctors.
 

pellicle

Professional Dingbat, Guru and Merkintologist
Joined
Nov 4, 2012
Messages
10,756
Location
Queensland, OzTrayLeeYa
"In my case I made it clear to the surgeon that I first trusted him and second I leaned towards the ATS. At the time I had almost no knowledge of the ATS. As it happens I think I got the best outcome."

So Pellicle himself leaned towards a valve he "had almost no knowledge of" and he trusted his surgeon to make the final choice based on the surgeon's superior knowledge?
Daniel, I typically ignore your comments because they are biased (and that's being kind).

Firstly I'm in Australia, where we have an entirely different system. First and foremost in our surgical and medical system is patient outcomes (note I didn't say satisfaction). The entire surgical hierarchy is driven by good outcomes, rather than by profits or individual clinics or practices making a profit. The success of good outcomes is driven by the long term society wide evaluation of full costs. If you come back to hospital that's not a benefit (as it would be in a profit or GDP driven analysis) its a negative. You'll find that Norway has a similar system too.

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?

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.

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?

1666134574256.png


I make my assessment of people by the amount of time the spend here after they gained the surgical experience stripes by how much time they spend helping people and how much time the spend attempting to run people down or discredit them.

Its pretty clear you major in rebuttal and working to ensure you feel good about the choice you made, not in the actual assistance of others.

Best Wishes
 

pellicle

Professional Dingbat, Guru and Merkintologist
Joined
Nov 4, 2012
Messages
10,756
Location
Queensland, OzTrayLeeYa
What would be the point of a forum where people just said “ask your doctor?”
agreed ... and anyone who follows the travels of NewWarrior will see he has nothing but conflicting opinions on what to do or even if he's in urgent need of surgery or not.

That's what this place is best at ... giving people a chance to catch up with other view, giving them a chance to see what others who have done that journey think.
 

Unicusp

Well-known member
Joined
Jan 30, 2021
Messages
330
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.
 

Superman

Well-known member
Joined
Oct 2, 2009
Messages
1,712
Location
Grand Rapids, MI, USA
So let the doctor's/surgeons inform and advise the future valver's what their best valve option is and what their individual risk from warfarin is now and in the future.
Ironical seeing you provide unlicensed and unsolicited financial advise to people on the forum with a limited view of their full situation, yet making the above comments.

I think (not that you asked) that some folks rub you the wrong way based on personality, so you have difficulty separating the message from the messenger and look for fault and things to disagree with. Any conversation about valve choice here includes mentioning contraindications for warfarin.

Many of us on warfarin get asked what life is like on warfarin, so we share our experiences. That’s a part of what the forum is for. It’s anecdotal and they just are our unique experiences, but they do show the reality that we live. That’s helpful for some in the decision making process. Especially when weighing against a greater possibility of repeat surgery.
 

pellicle

Professional Dingbat, Guru and Merkintologist
Joined
Nov 4, 2012
Messages
10,756
Location
Queensland, OzTrayLeeYa
Ironical seeing you provide unlicensed and unsolicited financial advise to people on the forum with a limited view of their full situation, yet making the above comments
I had been meaning to bring that up, but wasn't wishing to seem more accusational than I was.
 

pellicle

Professional Dingbat, Guru and Merkintologist
Joined
Nov 4, 2012
Messages
10,756
Location
Queensland, OzTrayLeeYa
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?
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
 

Chuck C

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Joined
Dec 5, 2020
Messages
1,793
It's interesting how group think here has evolved into you and your group believing posters such as yourself and your small group have as much knowledge as doctors and surgeons and that readers should take your medical advice/knowledge as equivalent to their medical professionals, especially with valve choice

Holy mischaracterization Batman! Talk about Straw Man arguments. Where to begin?

You shared how input on the forum shaped your decision process, and almost caused you to make a bad decision. I’ll share my experience with how reading the experiences shared by others helped me make my choice, which I believe was the right choice for me, and for which I’m very grateful.

I was torn between going tissue and going mechanical, but heavily leaning tissue. After all, I like eating greens, sometimes I drink beer, and, most of all, I’m very physically active. It was very helpful for me read the real-life experience of what life was like on warfarin, for posters on this forum, some of whom have been on warfarin for many decades. I learned that people could run and bike on warfarin. I also learned that there is no need to limit greens when on warfarin, and that most eat what they want, with a few well-known exceptions.

So, I ultimately changed my mind, after input from the forum, and after consults with my cardiologist and surgeon, as well as talking things over with family members.

And, as I was helped by others sharing their experience, I try to do the same. When I see someone, for example, saying that they are afraid of warfarin because they are active and like to exercise, I will usually share with them that I was active before being on warfarin, and am just as active now that I am on it. There is a lot of misinformation out there about warfarin, often being spread by folks who should know better, and it helped me to hear about what life is really like on warfarin from those living on it. From what I hear, others have also found this anecdotal real life experience feedback helpful.

You present a false dichotomy. You frame the decision process as a binary choice: Either listen to your doctors or listen to random people on the internet. What me, and several others (our group??) tell people over and over again is that you are your own best medical advocate and to make an nformed decision. Your cardiologist and your surgeon are a vital part of that informed decision process. But ultimately, your cardiologist and your surgeon will not have to live with your valve choice- you will. They will not be the ones facing reoperation or a lifetime on anti-coagulation- you will. As such, it is the patient’s choice and I, and many others, always encourage people to make informed choices.

Here is what that means, in my view and what I have posted several times:

-Try to understand as much as you can about your condition and your choices- be informed.

-Have meaningful consultations with your cardiologist and surgeon prior to your decision. This would involve, ideally, having done some due diligence on your condition and going into the consult with a list of informed questions.

-Seek second and even third opinions from other medical professionals. But, brace yourself for a wide range of opinions. A good example of this would be NewWarrior, who started this thread, and he has had multiple opinions from cardiologists and surgeons, some recommending mechanical, others tissue, some telling him get surgery now, and others telling him to wait…up to 2 or 3 years. So, yes, he is taking their input, but ultimately, it is his decision, and he will be the one who has to live with it.

-Learn from others who have walked the path that you are walking and have faced the choices that you are facing. How do they feel about their decisions? What is life like with the choice they made?

-Discuss the choices over with your family.

I do not tell people to just listen to us and don’t listen to your doctor. That is a Straw Man argument that you often bring up. I don’t see anybody doing that here. And, despite your narrative, I don't tell people what valve to choose. On the other hand, if blatantly false information is presented by a member, you’re likely to get some voices to counter that. For example, if a nurse or doctor tells someone that everyone who goes on warfarin can’t eat greens, must live a sedentary life and will become impotent, well, yeah, you’re going to get people pushing back against that misinformation.

The forum is more than just wishing others good luck on their upcoming procedure and congratulating them on their anniversary. Collectively there is a lot of experience on this forum and people benefit from reading of the experience of others. I know that I have and others often share that it benefits them as well.

I am not going to be muzzled or intimidated by your attacks. I will continue to share what my experience was, why I made the choice I did and what my life is like on warfarin. I expect you will continue to pop onto the forum every few months and yell at everybody:

"Warning, don't listen to any of these random people here, only doctors know stuff."

Ultimately, all are free to do that as well. If someone wants not learn about their condition or how others dealt with the decision and just put their complete faith in the decision of a surgeon, that is totally their choice. But, as we see over and over again, the opinions of surgeons are all over the map. Just look at Newwarior. He had the same echo shown to multiple cardiologists and surgeons. Some told him mechanical valve, some said tissue, some said get surgery now, others said wait as long as 2 to 3 years. So, "Just listen to your surgeon and trust them" gets a bit complicated when you realize that expert opinions can be all over the map.

Another personal anecdote. My first cardiologist told me that I would not need surgery for 5, 10 or even 20 years, based on my echo and my performance on the treadmill. A few weeks later, I met with a highly decorated surgeon, Alfredo Trento, head of cardio thoracic surgery at Cedar Sinai. he told me to get surgery now and he has an opening next week, even though my aortic stenosis was only moderate. So, it can be a lot more complex than just listening to your surgeon and cardiologist and doing what they say. I continued to get other consults with top cardiologists and surgeons and believe that both of these initial consults had it wrong. I ultimately made my own decision as to timing and valve type, but it was not on my own, it was with significant input from another cardiologist and major input from the second surgeon I consulted with, who ended up being the one who operated on me. And yes, there was input from folks on this forum, from their own personal experience, which I strongly considered as well, leading to my own decisions.

I do appreciate one thing about your post- you’ve given me a new nickname to call Pellicle- Guru :ROFLMAO:
 
Last edited:

Timmay

Grandfather Clock
Supporting Member
Joined
Apr 22, 2022
Messages
136
Location
Frederick, MD
Holy mischaracterization Batman! Talk about Straw Man arguments. Where to begin?

You shared how input on the forum shaped your decision process, and almost caused you to make a bad decision. I’ll share my experience with how reading the experiences shared by others helped me make my choice, which I believe was the right choice for me, and for which I’m very grateful.

I was torn between going tissue and going mechanical, but heavily leaning tissue. After all, I like eating greens, sometimes I drink beer, and, most of all, I’m very physically active. It was very helpful for me read the real-life experience of what life was like on warfarin, for posters on this forum, some of whom have been on warfarin for many decades. I learned that people could run and bike on warfarin. I also learned that there is no need to limit greens when on warfarin, and that most eat what they want, with a few well-known exceptions.

So, I ultimately changed my mind, after input from the forum, and after consults with my cardiologist and surgeon, as well as talking things over with family members.

And, as I was helped by others sharing their experience, I try to do the same. When I see someone, for example, saying that they are afraid of warfarin because they are active and like to exercise, I will usually share with them that I was active before being on warfarin, and am just as active now that I am on it. There is a lot of misinformation out there about warfarin, often being spread by folks who should know better, and it helped me to hear about what life is really like on warfarin from those living on it. From what I hear, others have also found this anecdotal real life experience feedback helpful.

You present a false dichotomy. You frame the decision process as a binary choice: Either listen to your doctors or listen to random people on the internet. What me, and several others (our group??) tell people over and over again is that you are your own best medical advocate and to make an nformed decision. Your cardiologist and your surgeon are a vital part of that informed decision process. But ultimately, your cardiologist and your surgeon will not have to live with your valve choice- you will. They will not be the ones facing reoperation or a lifetime on anti-coagulation- you will. As such, it is the patient’s choice and I, and many others, always encourage people to make informed choices.

Here is what that means, in my view and what I have posted several times:

-Try to understand as much as you can about your condition and your choices- be informed.

-Have meaningful consultations with your cardiologist and surgeon prior to your decision. This would involve, ideally, having done some due diligence on your condition and going into the consult with a list of informed questions.

-Seek second and even third opinions from other medical professionals. But, brace yourself for a wide range of opinions. A good example of this would be NewWarrior, who started this thread, and he has had multiple opinions from cardiologists and surgeons, some recommending mechanical, others tissue, some telling him get surgery now, and others telling him to wait…up to 2 or 3 years. So, yes, he is taking their input, but ultimately, it is his decision, and he will be the one who has to live with it.

-Learn from others who have walked the path that you are walking and have faced the choices that you are facing. How do they feel about their decisions? What is life like with the choice they made?

-Discuss the choices over with your family.

I do not tell people to just listen to us and don’t listen to your doctor. That is a Straw Man argument that you often bring up. I don’t see anybody doing that here. And, despite your narrative, I don't tell people what valve to choose. On the other hand, if blatantly false information is presented by a member, you’re likely to get some voices to counter that. For example, if a nurse or doctor tells someone that everyone who goes on warfarin can’t eat greens, must live a sedentary life and will become impotent, well, yeah, you’re going to get people pushing back against that misinformation.

The forum is more than just wishing others good luck on their upcoming procedure and congratulating them on their anniversary. Collectively there is a lot of experience on this forum and people benefit from reading of the experience of others. I know that I have and others often share that it benefits them as well.

I am not going to be muzzled or intimidated by your attacks. I will continue to share what my experience was, why I made the choice I did and what my life is like on warfarin. I expect you will continue to pop onto the forum every few months and yell at everybody:

"Warning, don't listen to any of these random people here, only doctors know stuff."

Ultimately, all are free to do that as well. If someone wants not learn about their condition or how others dealt with the decision and just put their complete faith in the decision of a surgeon, that is totally their choice. But, as we see over and over again, the opinions of surgeons are all over the map. Just look at Newwarior. He had the same echo shown to multiple cardiologists and surgeons. Some told him mechanical valve, some said tissue, some said get surgery now, others said wait as long as 2 to 3 years. So, "Just listen to your surgeon and trust them" gets a bit complicated when you realize that expert opinions can be all over the map.

Another personal anecdote. My first cardiologist told me that I would not need surgery for 5, 10 or even 20 years, based on my echo and my performance on the treadmill. A few weeks later, I met with a highly decorated surgeon, Alfredo Trento, head of cardio thoracic surgery at Cedar Sinai. he told me to get surgery now and he has an opening next week, even though my aortic stenosis was only moderate. So, it can be a lot more complex than just listening to your surgeon and cardiologist and doing what they say. I continued to get other consults with top cardiologists and surgeons and believe that both of these initial consults had it wrong. I ultimately made my own decision as to timing and valve type, but it was not on my own, it was with significant input from another cardiologist and major input from the second surgeon I consulted with, who ended up being the one who operated on me. And yes, there was input from folks on this forum, from their own personal experience, which I strongly considered as well, leading to my own decisions.

I do appreciate one thing about your post- you’ve given me a new nickname to call Pellicle- Guru :ROFLMAO:

Extremely well said Chuck!
 

Daniel758

VR.org Supporter
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Daniel, I typically ignore your comments because they are biased (and that's being kind).

Firstly I'm in Australia, where we have an entirely different system. First and foremost in our surgical and medical system is patient outcomes (note I didn't say satisfaction). The entire surgical hierarchy is driven by good outcomes, rather than by profits or individual clinics or practices making a profit. The success of good outcomes is driven by the long term society wide evaluation of full costs. If you come back to hospital that's not a benefit (as it would be in a profit or GDP driven analysis) its a negative. You'll find that Norway has a similar system too.

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?

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.

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?

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I make my assessment of people by the amount of time the spend here after they gained the surgical experience stripes by how much time they spend helping people and how much time the spend attempting to run people down or discredit them.

Its pretty clear you major in rebuttal and working to ensure you feel good about the choice you made, not in the actual assistance of others.

Best Wishes

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.

It's also important to show how this advice could harm them.

If you were a new person here looking for advice, why exactly would you not want to know this?

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.

And that could be dangerous for new people coming here during a vulnerable time.
 
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