I guess I can start off by saying that I understand SRM’s comment about needing to take a break. I have since this board started tried very hard to ensure that I did not input my own feelings and opinions and try to stick to the medical facts. Answering a single question sometimes requires a few hours of reading to insure that the info you are passing out is the most accurate and current data available. I tried to only insert my own opinions when telling my experience. This is one of about 4 different boards I’m current on and I’ve probably seen more newly diagnosed AF patients here than on any other one. There are probably 3 times as many questions asked and many more new people starting off with I don’t understand and I’m scared than on most other boards combined.
For that reason I felt that someone coming on here with a “Scare Tactic Book Ad” causes harm to a newly diagnosed AF patient who is already scared to death. After teaching for 14 years I learned that most students, new to a subject, will remember what causes the strongest impression on them. Trying to pass out the important information that deals in fact, medical studies, trials and statistics Just seems to pale in comparison to a good Corporate driven conspiracy based drama. I guess I was wrong in thinking that I was helping by not letting that be the first thing a confused and scared new AF person sees and remembers. I mean come on… If you were new to this and the first time on you see 20 blogs most with headings about anticoagulation or Valvular AF or Dr John’s 12th fact OR MUST READ, DANGEROUS, CORPORATE DRIVEN, UNSAFE PROCEDURE. Which are you going to read first? They will go away knowing that they really need to get this book so they don’t die. First impression…. They say it counts for a reason. They will go away and not remember any of the thoughtful, important information that is contained in those blogs with the boring names But they will remember that they must stay away from “AN ABLATION”, that evil thing that’s only purpose is to line the pockets of those wicked catheter manufacturers and money hungry corporate executives, doctors and hospitals.
And what is actually the truth? Will they read that there are now, Just in the US, many thousands of Ablations done every year with a reported <.1% fatality rate, or that thousands are effectively “Cured” of AF each year by the ablation or combination procedure. Nope those are only facts and do not make as bold of an impression.
Now let’s get personal, I was offered an ablation almost 3 years ago. Even though I had AF for about 11 years I knew absolutely nothing about it. I depended on an “out of date” Cardiologist to care for me because He’s the expert. But basically nothing had been done for almost 11 years. I finally went to an EP and for the first time was actually being treated for AF. Within the first 6 months he suggested I have an ablation. What was that? Running wires into my heart!!! That doesn’t sound too good. I started looking for information on the ablation which already had me scared to begin with. By the way, I think I may have heard that same thing here quite a few times. Anyway I found this book online that is going to tell me everything I need to know about it. It is a “MUST READ PRIOR TO SURGERY”. Wow… I found it….
So I read the book. What a horrible story, How could this happen to someone? I thought Drs were supposed to help you, especially a top specialist in the field. Nope…No Way… This will not happen to me.
I went back in for my next appt and said “No Thanks Doc.” No ablation here. For the next 2 years, because I found out that I was at stroke risk and had not heard that (for the last 11 years) until my EP told me and put me on Warfarin, I decided I’d better learn about this AF thing. I read, studied, found every forum on the web, asked thousands of questions and I learned. In all of this I learned about and spoke to hundreds of people who had the ablation done and the facts, statistics and stories I got were not what I had learned from that MUST READ book. So I went back and read it again, only this time with a pretty good understanding about AF and its treatments. Wow, this time it didn’t scare me like it did the last time. I saw a really sad story, something that never should have happened, things that went wrong that should not have went wrong. But was it about how DANGEROUS the ablation was? No, It was all about the people that caused this pain. It was about assigning blame to everyone who may have, even remotely, been involved with this. It was about revenge. It’s about a large corporate conspiracy to skew the facts, data and statistics to make money. To stop at nothing to cover-up how bad this procedure is because the bottom line is how much can we make!
Now the sad part was that I had wasted almost 3 years, suffering 1 or 2 attacks a week and taking chances, playing the odds that I won’t get any of those bad side effects from the AF drugs that I had been taking. You know, if I needed to take them, well then I guess the risks were worth it. But I didn’t really need to. There was a procedure that my EP had suggested almost 3 years earlier that could have gotten rid of my AF.
OK… If I knew 3 years ago what I know now, then the book would have been an interesting read but I could still have decided whether or not to have an ablation based on the facts, not something that happened 11 years before and written by a man with an axe to grind.
So the question… How many of those who come here for the first time basically screaming for help, have a really good understanding of AF and its treatments? I would probably have to say… NONE! Then again I ask myself… Is this the first thing I would want them to learn “MUST READ” Or maybe it would be better for them to find out that they are not alone and there is help out there, you don’t need to be scared of this… We can help you get through it.
How many posts have you seen from Mr Walters trying to help calm down a new member who is confused and scared? How many times has he jumped in there to answer a question about rate control or rhythm control, why am I so tired or is this going to kill me? No all you get from him is “MUST READ” BUY MY BOOK AND SAVE YOURSELF.
Also Thanks reevo, your comment letting everyone know that you really don’t need anticoagulants because you’ve got the same stroke risks as everyone else without AF. That helps a lot. Let’s see, just on this small board we have heard from a few in the last few months that have had TIAs and strokes after an AF attack. And I talk too many on other boards every day. Maybe they just hadn’t heard that they wouldn’t have a stroke. Hope you’ll at least send out sympathy cards when they take your advice. They come here because they don’t know and most will believe what you tell them, It would be nice to be sure it’s right.
Oh well.. Like I said… I tried! I made a lot of friends here. I pray for the best for you all.