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.
Tim
Written by
TheStand
To view profiles and participate in discussions please or .
I have read this 3 times, and I think you might be trying to say goodbye, and I really hope that is not true.
On this board and on others, you and people like Bob D and SRM Grandma are the gurus who so many people turn to for practical, sensible and above all factual advice about their A Fib, and to lose you would be a great loss to our community.
You are right, this board is the one to which many of the newcomers come first, I think because a) it linked to from the AFA website, and b) it's easy to read and interact with that some of the others, And it exactly for this reason that your sage advice is so badly needed.
I try and help where I can, I work from home on the internet, so to take a ten minute break every two hours or so actually takes me away from Napierian logarithyms (I kid you not) and into this welcoming community where I hope my limited knowledge will inform, educate but above all comfort those distressing times of new diagnosis we all remember so well.
But you are better at this than most, your knowledge is deeper, your experiences both personal and in reading greater.
Take a break Tim, you've had a hell of a week I know, go and re-charge the batteries play with the grandchildren and forget all about us for a while.
But please come back, not only because I value you as a friend, but because YOU make a difference to so many people's lifes. I can think of no greater compliment I can pay anyone.
Very true Tim. If it were not for you when I joined I don't think I would of had my ablation. I also saw the book but I took it as a bashing towards the hospital and drs. Just by listening to your experience with your ablation it made me feel so much better about getting mine. And I must add, the best decision I've made about my AF so far!!! Thank you for guiding me and I hope you are staying on this forum.
Tim, If you need a break have it, but please come back, we newbies REALLY need your input, I totally agree with you we don't need anyone to scare us, we are absolutely terrified already. When I have asked questions you have answered me honestly, I have learnt an awful lot about my condition from both you and Bob and other kind Forum members.
I am extremely glad I had an ablation, I am extremely symtomatic, my life beore ablation was the pits.x Beth
Yours ,along with Ian,Bob and SRM Grandma was one of the first posts I read when I found this site. You are absolutely right that most of us don't have a clue about AF when newly diagnosed. I certainly had no idea of the stroke risk and that I should be taking an anti-coag.,I was only prescribed Aspirin. I Sincerely wish I had found this site early than I did
.( To Reevo - I then went on to have a T.I.A. and a stroke .You could say it may have happened anyway but I have no other cause for this i.e. I DON'T have high blood pressure, diabetes , drink or smoke or am overweight and am only 58 yrs old therefore having a stroke only 2 months after diagnosis leads me, without to much intellectual ability to conclude that it's an AF related problem)
After being very ill with AF I've opted for the ablation ,which is to be done next Monday and I'm obviously scared but am more scared of staying with AF and stroke risks .I do realise the risks of an ablation and for that very reason decided not to read Dan Walters book. I have made up my mind as what to do and don't need any unhelpful info.
The commercial side of this procedure works in reverse here in the U.K. Believe me none of us would be permitted this very expensive catheter ablation if it didn't have a high degree of success ,it is totally funded by the N.H.S. and therefore free to us all ,unless you opt for private treatment .I am very grateful for the to be offered it.
Please Tim continue to offer encouraging advice and facts, you are extremely knowledgeable about the subject and that's what everyone needs help with, particularly initially .
I too agree with all the others. You have been a great help and support to me and with your wise words have comforted many and led them away from fear and worry. I read part of this book and my heart goes out to this man and his wife. Having said that, it is a very unusual experience and so statistically is not significant and not something that needs to be read to make an informed decision. Thanks again for all your input and stay with us. Marie
I agree as well, you, SRM Grandma and Beancounter are so helpful to us all, please don't leave us. As Marie said Thanks & stay with us. Got to go and look up Napierian Logarithyms now! Pauline
Hi Tim, please relax and have a break if you want but don't go forever. I know how hard it can be to give impartial, sensible advise and how many hours it can take to monitor questions and above all try to HELP people who are at their most vulnerable. Self serving trolls who just want to hurt (usually because they themselves have been hurt) should be pitied . Every forum gets them from time to time and yes I have had to speak to moderators and ask for a particularly nasty post to be removed. On AFA Forum this doesn't happen much as all posts are vetted before posting but here is different. Of course I could just be one of your alter egos giving you support to continue self interest as could Ian and Grandma but I doubt anybody would believe that. . ha ha.
Illegitamese non carborundum as they say. Don't let the b------s grind you down.
Tim, please don't let some over zealous keyboard warriors take you away from us! Your advise is essential to us all, even if some don't believe this to be true X
Frankly i'm glad i wasn't a student in your class. It seems you cannot or will not separate feelings from facts. Read my post - I was NOT giving advice about stroke/anticoagulants . I was just quoting a very well respected UK EP. Why not read/listen to his opinion before trashing it? once again hardly an objective attitude toward learning.
Nowhere did i say that a/fib sufferers will have a stroke, as some unfortunate sufferers on this forum have experienced. I was merely sharing an alternative opinion, questioning the risk percentage, i.e., that some EP's say is exaggerated for most patients. Why argue with me? ask them why they believe that or listen to what they have to say.
What about the percentage of patients on anticoagulant medications who hemorrhage with sometimes devastating results. There is a risk either way.
Comforting someone who is suffering includes listening to their feelings, so they feel understood and supported.
That is separate from gathering,sharing info/facts in as comprehensive manner as possible, which includes thinking outside the box. Look what sometimes happens when anybody dares step out of line and explore other opinions; a ton of bricks comes down around their head.
I have had three ablations, I never look at the risks as I totally trust Papworth hospital, Cambridge. I am now as good as I am going to get and have my life back tho still suffer episodes. I've decided not to go for pacemaker with support of my consultant as I play around with ponies and don't want the risk of getting whacked in the chest. I am spot on at taking anti coagulants as I want minimum risk of a stroke and I am content with my life. I live with Af and live well.
The fury for me was the misdiagnosis some ten years ago which led to my having it as badly as I do. Note to doctor, when a slightly overweight middle aged woman is telling you she does a lot of physical labour and is breathless she is not saying actually I am overweight and sit around all day and that's why I am breathless.
i thank you for taking the time to write your knowledge with such passion, and i admire you . im sitting here in ireland i have a fib , im in a fib as i write waiting for it to pass. my son has come for a visit from australia and i tried sooooo hard to explain to him aged 37, how i feel. i feel healthy and it will pass, just bear with me son . i have read what i can about this condition i spoke about ablation to the specialist before i went on to new meds, and i will speak to him in June. He uses big words and i am lost and lonely with my sickness. i heard my 16 year old grandchild say she could not come with me to the shops for company, she did not want to be stuck with me she said. i was devestated. it is so invisable, yet so frightening. i also have sarcoidosis in different parts of my body , but i am in a gym,swimming when i can and i drive ,paint and have a happy life, but there is a cloud hanging over my heart , it could hammer away anytime into a fib.
thank you again for being you and caring enough about others , when you have your own things going on .
Please don't leave the forum -you and others have given real advice and info to so many frightened people.
Every time you walk out the door, cross the road or drive the car you are at risk; there is only one guarantee in this life so whatever your problem is medically ....go for living.
As in many parts of life not everyone will agree ; not everyone's experience will be totally
the same but I reckon that the fear we all go through is. Fear and lack of knowledge can cause so much pain and you have helped so much in that area alone. Don't leave because of this..... have a break enjoy your grandchildren and live for yourself for awhile...you deserve it.
My Gran used to say talking face to face is the safest way to collect & impart knowledge ...because as good as the written word is if you read a passage /letter/post I & you stress one word ( which the writer didn't ) it can change the whole meaning of it. I try so hard to be as clear as possible but I make mistakes on a grand scale sometimes........ it's called being human.
So as I'm a newie to this site I apologise now for any hurt or slight I make now or in the future......
Keep well Tim.... go play ...and know that here's one person that will jump on operating table if I get the chance of an ablation!
First thank you all… The responses that you posted have really touched me.
Yes Ian, you are right, I was trying to say goodbye to something that I love. But even doing that I noticed, after I posted, another question from duckpopper saying “Can anyone help”. I logged off and sat at home for the next 2 or 3 hours with this idea of someone scared and begging for help. How do you turn your back on that? Even though I had decided to stop, I found myself back on and typing an answer, because how can I just sit and do nothing while someone is scared, confused and hurting.
Reevo, in his response, spoke on the issue of motives and I will state mine so it is clear and open. I will not go into religion here because this is not the place to debate that. In my beliefs, a man, 2000 years ago willingly gave all and died for me, showing love and concern for my life and happiness beyond understanding. How then, believing that, can I do less for someone else who is hurting? I am not selling anything, not being paid to be here and have nothing at all to gain from being part of this, so other than what I stated above I have no motivations.
On the issue of reevo, In his response to me on my “Sorry” blog, you can read where he says
“and/or casting aspersions on me an author; recently it was mercenary, sell more books etc., now its 'revenge', again i ask you, unless you are psychic, how do know that??” I made those comments to the author of the book.
Do you notice the “ME an author”? I think that it is clear now, what many of us have spoken about in messages, That reevo is Dan Walter is jimmykildare. Hence Bob’s comment “Of course I could just be one of your alter egos giving you support to continue self interest as could Ian and Grandma but I doubt anybody would believe that. . ha ha.” And then on the subject of “alter ego’s” in the blog written by reevo “Hi Stand” jimmykildare (dan walter) wrote a comment stating his views and about 30 minutes later reevo (dan walter) wrote a response to it stating “Excellent post, in the true spirit of a skeptic ( i use that word not in its modern, popular meaning, but in its original usage i.e., gather as much facts/info as possible, but when arriving at a decision, keep the conclusion open - further evidence may be found later which 'changes the game' ).” Wow, that is awesome… Write a comment and then log back in as a different person and pat yourself on the back. He asked me “what have I got to hide”? I guess taking it all in, that’s kind of funny! And again in order to be clear and not wanting anyone to think I am using a log in trying to hide who I am. I log in as TheStand. My name is Tim Hestand or T Hestand or TheStand. And I don’t need 3 accounts to support myself.
In many responses reevo had stood up for Dan Walter and supported his ideas attempting to drag me into an argument and basically applauding Dan and also jimmykildare. This is a tactic used by many political groups and others today. Place someone incognito into a crowd to either support the person speaking or try to cast doubt on what someone is saying. To try and incite the unknowing crowd. If they knew it was you then they may not agree but I it’s an unbiased observer then you may jump on their bandwagon. Simply awesome tactic!!!
I am happy that jimmykildare (dan) conveyed his thoughts on ablation and did not have to put it under an attention grabbing title. I have no problem at all with his views but to log in and use a overhyped title, Post an Advertisement and leave is not a discussion of procedures. It is simply an advertisement to sell a book.
I'm not going to talk about the Dan Walters stuff, to my mind it's not necessary.
I am going to ask for just one thing from you.
Print out all the replies you have got here, and put them on your wall, next time you have self doubts, or are even having a bad day, read them.
You are a fantastic advertisment for your religion and for the human race, I happen not to share your religion, but I am in complete awe at your compassion, and your drive to help others.
You are loved by many, and this is the genuine love that is earned, not given for any other reason. I am one of them
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
X
Sorry - I’m a bit confused...
Magnesium, yet again, sorry!
sorry, me again with another question 
