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