AF Association
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Afib will not kill you - oh really!

A few well meaning contributors often say to newbies - do not worry Afib will not kill you!

This I feel is misleading others into a false sense of wellbeing. There will be people who hang on to information like that, treating it as a green light to carry on as they have always done. Particularly young people who exercise extremely every day, or for that matter those who are incapable of thinking things out for themselves.

As unpalatable as it is, we could not live with an elevated chaotic heartbeat in excess of the medically accepted norm. Whilst Afib may not always kill you direct (personally I believe that it can & does), it is nevertheless the root cause of heart attacks or strokes that do and can kill you/I.

I would also add that we are doing ourselves no favours, by going back along with the view that it will not kill you. Hence the reason as to why this condition is 100s of years old - with no cure. We have in many respects been relegated to a non threatening life condition - totally wrong.

Unfortunately our condition gets hidden amongst "Heart attacks & Strokes", whilst the real killer is getting away.

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John I totally agree. It is not just well meaning contributors here I have heard this from. Even healthcare professionals have said the same, including specialist cardiac nurses.

Yet by the same token, people who have actually treated me at times when I've said "I'm sorry to be here again taking up your time in resus" have told me off and said with an elevated HR over a prolonged period I've done absolutely the right thing and no one in A&E would ever say anything different other than "get treated immediately"

Yes it is true it "won't kill you" directly, but it has far too many associated risk factors with it to be ignored, untreated and dismissed as you continue on your merry way without any adjustments to anything.

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This is true, we would all have been lost at sea without being able to read stories and experiences of others here that's for sure. I really should read OP when I'm not on truckloads of Codeine.

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If that were true "gone to great trouble etc", we would not be here. Unfortunately the advice being given it is more like "You will be alright", with no thought that if that person carries on exercising/that work lifestyle, then they most certainly will be in serious trouble. That is the whole point as to why I have raised this topic.

It is not about being overly blunt - it is about being sympathetic with a dose of realism.

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If my post was inflammatory and my opening sentence was offensive (incidentally not intended), then I will go to bed comfortably knowing that was all that happened. The truth being they were neither. However, what will happen will be that posters will be more choosy in the future as to what level of sympathy they give out. Telling people it is honey and roses is not helpful, a mixture of sympathy and reality will keep them alive. If that offends you......well, there you go.

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Hi John, I know that we have had this discussion before and that you should know that my take is "controlled AF will not kill you. " I do agree with you that a lot of people seem hell bent on self destruction with their addiction to exercise but it would be equally totally wrong to say exercise kills.

Where I do think we disagree is your assumption that AF has been down graded by the medically profession because of this. True 30 years ago you would have been unlikely to be treated for it other than a pat on the head and a lump of sugar because the link with stroke was not widely known and because it was so common in older people. It was thought to be a natural process of ageing. Now we are more proactive in assessing anticoagulation needs and trying to control heart rate and thus ensure that the heart does not "wear itself out" or result in cardiomyopathy leading to heart failure.

I would disagree that AF causes heart attacks. A heart attack happens when the blood supply to the heart muscle is interrupted usually by blockage of one of the cardiac arteries leading to death of some of the muscle . (mio-cardial infarction) . This is unlikely to be a result of AF or any other arrhythmia. There are some arrhythmias which can cause death for sure but that is for a different discussion.

What is "new" if you like is the growing feeling amongst some leading medics that AF is actually a symptom rather than a condition but what of is as yet undecided. The move towards self help by changes to life style is growing and in my view not before time. The increase in obesity not just in USA but UK and Europe has I feel prompted at least in part the rapid increase in the number of people with AF as has the increase in people doing endurance sports. I am sure we will not disagree that over eating is bad and can kill.?

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Hi Bob, As you say we have had this discussion before. What I am not always seeing is "Uncontrolled AF will not kill you " actually being tagged on! I mentioned before that "you will be okay advice" should come with a "caveat" of - providing you stop trying to do 4-minute mile/stop working silly hours etc. Re heart attack, that was said by my GP, however, if he is wrong, then others have replaced that one with "Heart Failure", apparently they can both have the same end result.

From a personal point of view, I feel that Arrhythmias are on this forum in abundance, as such, a few members are splitting hairs by claiming that it cannot cause heart attack/heart failure etc. The bottom line is that without treatment - nobodies heart is going to last long.

My point on this post has to do with two other posters - both much younger. The one gets up at 4.00 am to exercise, the other is stressed with work/hours - both were told that they would be alright, normally I would say...fine. Placating is one thing, telling them to slow down is another. To say you will be okay without saying slow down - is not okay, that is what is happening. I am contrary to what some are reading - not a doom and gloom merchant.

Cheers John.

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Hi John I have had PAF for 7 years and only last year had an ablation as my heart had become enlarged with the frequent attacks of PAF and I was in and out of A and E every month or so with HR at 200! I was on on Flecanide and still am, candestarten verapamil etc but all that lot didn't stop the attacks. So Yes I agree with you it can kill you as i now have a very damaged heart. The ablation has lessened the attacks but I'm still having them and I'm on the waiting list for another ablation. I have been told to call 999 when i have an attack but I never have because the hospital is quite near and my husband or a family member takes me probably quicker than an ambulance. I had an attack in December last year the following week i had a mini stroke, I am on blood thinners though so they probably prevented a major stroke.

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HI Luisa, So sorry that you have had a rough time. Unfortunately we have a few who do not see Afib as clearly as you do. Only today (Sunday) a medic posted on here that Afib alone can see any of us off if we do not look after ourselves properly. When they say properly, they basically mean - no excesses.

Hopefully your next Ablation will help you to get back onto the road to recovery, thank you for your input.

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Any arrythmia including AFib that can cause a fast ventricular rate will result in much increased need for oxygen in the heart. If there is CAD or other abnormality that causes decreased oxygen flow the chances of myocardial infarction are gteatly increased.

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The doctor's words in Resus "AF will not kill you" Anybody that uses that phrase in here has probably had the same thing said to them. One assumes that if your doctor says to you when your heart is going at 200+ that you will not die that he will know because he is a doctor and you can't blame anybody for wanting to hang on to those words especially when this is your first attack and things are all very frightening!

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If you are in the hands of a doctor - then fine! On here it is not the same.

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But 'on here' is where very many first time AF sufferers come to, because they are so very anxious about what is happening to them! It is a truly life changing thing for most people when they get their first diagnosis, and here in the UK the A&E department have generally neither the skills nor the time to give people a full explanation of all the ins and outs of AF. People in that extremely high state of anxiety need the reassurance that the more experienced and knowledgable sufferers on here can give them. If they then learn enough about their new condition, by reading all the posts and links on this site, they can then start to make up their own minds about how dangerous AF is and isn't, and how they should go forward. The first response is a requirement for reassurance, to give them time to go through that learning process without being panicked.

I'm sure you have already gone through that process. Do you remember how you felt the first time?

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Sorry for gettingback to you so late - a trifle busy as you can see.

I have to be honest and say.....A forum was one of the last places that I went to, as I was initially looking for professional answers - not sympathy as such. Having trawled the net and found certain answers, it was then time to find out the experiences/advice of others.

Upon joining the forum I have had a good insight from many others, on treatment and also the vastly differing levels of Afib attacks. It is an invaluable forum,however, like almost anything, it can always improve.......and why not?

With regards to people making up their minds as to how much danger they are in - not everyone is capableof that. As you can see on this forum, some get depressed just reading a topic, almost suicidal so I am led to believe. Those are the people who need positive/accurate guidance, as they are more than likely to follow well intentioned poor advice.

It is evident from other posts further down, that there is a level of agreeance in what I have said, plus a similar question had been posted by another some months ago.

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I think that oversimplified, and overused phrase is an attempt to calm the newly diagnosed and means that this crazy heartbeat is not going to kill you RIGHT NOW. And a person with well managed AF does have a normal life expectancy. However, poorly controlled AF does indeed increase the risk of heart failure, stroke, and dementia. When I was diagnosed a few weeks before turning 50 I was told I had the disease of 80 year olds. I think it is that mindset, that keeps AF from being treated aggressively from the start. Yet today it is not uncommon with people in their 20's and 30's. I feel like AF is often a wake up call to a healthier life. At the time of diagnosis, I was overstressed, not sleeping well, taking too much ibuprofen and other meds with the hidden, never mentioned side effect of "irregular heartbeat", and was not exercising. AF was a GIANT wake up call to change all of that and find my healthiest self. So now, 15 years post diagnosis I am, by every measure, much healthier than I was then.

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Are you free of a fib

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Yes I am currently AFib free for the past 3 years.

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John, if people living with permanent AF can last for years, than it is obvious that AF is not life threatening. Heart attack is definitely not a consequence of AF and stroke is also not directly caused by AF. The real danger is the close vicinity of SCA, what can be reached if strongly exercising when in AF. It is such a lucky circumstance that our heart is capable of functioning even if the "precharge" through the atria stop working properly. Instead of stopping completely, our hearts continue to function with slightly reduced output. If it would not be possible, AF would cause immediate death. We are still the lucky ones!

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baraba52. You are right in your first comment, you are wrong in your second comment. Heart attack/Heart failure = can end up pretty much the same, stroke is also on the agenda to see us off - hence the reason for coagulation.

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John6, it is not necessary that we always agree with others - forums are here to get different thoughts and standpoints. In the past 5 years I have learned so much reading the posts here! What a precious source of information!

AF is not so bad as it seams at the first look. People diagnosed with AF are usually those ones with very debilitating symptoms and pose just a small portion of all the people living with AF, but most of them never get diagnosed because they have almost no symptoms. So many here have reported to have been diagnosed with AF as a byproduct of medical examinations related to other health issues. Compared to cancer, with life prognosis of 6 months when diagnosed late, we have a very encouraging future before us.

When heart attacks and strokes are concerned, AF is not to blame at all. BobD has given to you a good explanation about heart attacks, and AF and stroke have the same cause and go in parallel, but AF is NOT a cause of strokes. Of course, it is a good sign of the danger to have a stroke, so hence the reason for "coagulation".

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Tell me that again! Asymptotic AF caused my significant stroke two years ago. And it’s named anti-coagulation.

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Asymptotic AF...? Yeah, it is known to the medicine that this kind of AF can cause strokes but, fortunately, it is pretty rare. Sorry about "coagulation" and thanks for correcting me! Be well, grandma, and live long!!!

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Sorry to disagree, but AF is indeed a very high risk for stroke as it can allow clots to form. stoptheclot.org/afib-2.htm

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When I first time read the data that AF patients are 5 times more likely to have stroke than the rest of the population, I definitely got worried. But after realizing that this data was calculated in relation to the number of diagnosed patients and not in relation to all the people experiencing AF, which number will remain unknown because they are asymptomatic and never get diagnosed, and which number may be 10 fold larger than the number of diagnosed patients, than it grew clear that the information of AF causing stroke may be more than questionable. Of course that I suspect that the whole game is again about selling the drugs and about the profit. That is the reason I refuse to take anticoagulants and will never take them. My choice...

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Yes, I was told I had a 10% chance of having a stroke within the next ten years. I replied that I thus had a 90% chance of not having one. Drug doses are based on the average man. I didn't get on at all with rivaroxiban and apixaban suggests half the dosage if you weigh under 60kg. I weigh 63kg but have met men much heavier than me on that same dose. No wonder I was feeling rough! So I have stopped taking them. I can tell when I get the odd short bout of paroxysmal AF, and take a flecanide tablet which I have finally manged to get prescribed. Things are back to normal heartwise fairly quickly and no one will tell me how long you have to be in fibrillation for the blood to clot.

I may be persuaded to go back on the anticoagulants if the doses were more appropriate and I got back to feeling as well as I did before this nasty diagnosis!

Good luck with your progress.

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I had a stroke in 2000 as a direct consequence of P A/F I was 55 because, as you know, when you are I A/F blood is not efficiently flowing, forms clot in the Atria and when then circulating can cause strokes - been on anti coags. ever since.

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Very well said because 3 weeks ago I think I would have been on the verge of hanging myself had I read the OPs post. When you are frightened to death that is the last approach you need. Nobody is asking people to lie but there is no need for that sort of brutality at the beginning. I certainly don't see how it would help stress levels. We all gradually learn in our own time but many people seem to forget what it was like for them in the first few weeks because they are old hands at it now so sod the vulnerable newbies

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Justsharon. Please re read the post - it is not as bad as you think.

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Unfortunately the new people may not see the instruction to re read the post.

Anxiety and depression are known side effects of heart problems, and negativity doesn’t help that state of mind.

I’ve had af at least since my teens, probably all my life, and have only had medication to correct it’s effects for the past two years.

I’ll be 70 in August, hopefully. If not, I’ll concede that you’re correct.

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Hi everyone, I'm new to the group, my journey began in 2008, when feeling unwell went to my gp, who checked my pulse, and after an ECG, was promptly whisked off to A&E, 3 more trips followed, and eventually I was lucky enough to be seen by a cardiologist, who reassured me that AF won't kill you. But the devastating diagnosis resulted in a total breakdown, and home from work for 5 months, too frightened to even venture out for a walk, Valium and anti-depressants were the only thing that kept me going. So I too have never forgotten how frightened i was initially. So for any newbies out there, there is hope and life can carry on, somewhat changed. I consider I am lucky now to know that I have AF, and taking anti-coagulants to protect myself from a stroke. I don't let AF dominate my life now, and I think that this is the point that we should be getting across to newly diagnosed sufferers. It is life changing, and you don't always get good advice initially, but to know that there are other people out there that have come so far must be a reassurance. Sorry to have rambled on a bit!

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Great post Flapjack, agree with you 100%.

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Flapjack. I think you are reading what is not there. Please read the post line by line, as it is about giving sound advice. I am not for sending people back out to a continued marathon just to make them feel better......as that could do more harm than good.

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Yes, people have lives to lead. In my case, they will not (if asked) be put in further danger through not being given the "correct" advice.

P.S. This post is more to do with a few previous posts of younger Afibbers - to tell them to carry on as was, ie you will be alright, would be plain wrong.

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Well out flapjack xx

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Well said. I so remember the fear and terror I felt when first diagnosed. I just laid there on the bed waiting to die at any minute. This site helped me so much. The irony is that I was a recently retired health professional of 50years at the time, I don't usually panic at many things, and was quite used to dealing with and knowledgable about the condition. But when I developed this condition everything I knew went out the window. To be able to connect with others going through the same thing , listen to different opinions, advice self help remedies etc was at that time so reassuring and helpful. This site provided that for me and proved invaluable at reducing anxiety thus reducing AF attacks. I have also learnt so much. Long may it continue..

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Well I for one got some reassurance from coming on here and reading the comments that ''AF would not kill me''.

I was diagnosed by letter during a period when I had suddenly developed frequent, long and symptomatic episodes of P-AF and I was very scared and confused. The anxiety was adding to my problems. The thing I needed most was a bit of reassurance that I wasn't likely to suddenly drop dead while I got grips with my new health status and learnt all I could about my condition.

Had I come on here and read AF was going to kill me it would have added to my anxiety.

Well AF hasn't killed me yet and was a wake up call to change my lifestyle and it might even have saved my life because I am now lighter, BP no longer high and healthier (and with my AF under control ) :-)

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If I had felt like that, then I would have seen the medics if I were not happy with medic (1). If you come on here you are likely to hear about the (experiences) of others - not necessarily medically backed.

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I don't know whey you live John but not all of us have easy access to helpful 'medics'. The GP I saw following my diagnosis (by letter) suggested I took an anticoagulant, asked me if I knew anything about AF and when I said 'not much' asked if I had a computer and told me to go and look it up. I did just that and wasn't able to work out from various health-related sites if my condition was serious or not so my fear and confusion continued.

Then I found this site and a wealth of information from the people who really know what they are talking about because they have experienced AF. Every kind of treatment and query is covered on here that is something you won't get by visiting a 'medic' .

When some people tell new members 'AF won't kill you' what they are actually saying is ..

'pause for a moment and be calm, anxiety and panic will make it harder for your body to deal with AF, you can learn to cope with this' ....and that is just what is needed at that time.

Most members don't claim to be doctors (though we do have a couple) , on the contrary people are always saying 'we are not qualified to give medical advice' but they can retell their own experiences and make suggestions that people can accept or reject as they choose .

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Re your first two paragraphs, we are both very much in the same boat. If being useless was a medical qualification - my GP would have a "Masters" in it.

Onto your 3rd paragraph. I would say that is down to interpretation, in many cases the words need to be said....not left to interpretation.

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I totally agree with you, I was diagnosed with AF, and given very little advice. The anxiety and stress that followed the diagnosis resulted in a total breakdown, with Valium and anti-depressants being prescribed. I felt that no one understood how I was feeling, my family didn't have a clue what to do with me. So for newbies, it's important to know that you can live with AF. I do think that newly diagnosed sufferers should be advised that there are forums that can help, if only to share worries and concerns, we've all been there at some point in our journey.

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My understanding is that AF is not immediately life threatening BUT the company it keeps can be and as many others have already said - it can also be a wake up call to change lifestyle - and actually improve our overall health!

It is very understandable, as others have again said, that we start our AF journey scared, uninformed and often angry - because this AF can change our lives.

The ONLY person I know who died as a direct result of AF was a young ex-marine who ignored all caution to cease exercising and get attention. He died after running hard and ‘pushing through the pain’ wereby he died of acute heart failure.

It’s a very emotive subject as many people live well with AF, which may only be an occasional inconvenience, whilst for others it totally changes what we can do. How we handle that will vary and it maybe very different for a young person than it may be for an older person - because at least half the poplulation will have AF if they live long enough because at the end of the day.

You are correct that in the past AF was downgraded - my father was very surprised when I said I had AF (he called it palpitations) because generations before just thought it was part of the ageing process - unfortunately some still do think like that.

The things I have learned about AF is that sometimes treatments work, other times they don’t but reacting emotionally (anger, stress etc) only makes things a whole lot worse - and I learned that the hard way.

I have just had the week from hell with a very bad chest infection which has meant that coughing has triggered fast AF - resting HR up to 180 - BP down to 85/56 & sats wavering between 88-92. I’ve had 11+ years of this - with about 3 years off after 2 ablations. I’ve learned to monitor myself - to know when I need to seek medical attention and when to accept that this is the way it is and find coping mechanisms. Much easier for an old lady to say than a young, fit man who enjoys exercising hard.

All I can say is that although it has felt as though it was going to kill me - it hasn’t yet!

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"The ONLY person I know who died as a direct result of AF" Well, that says it, does it not (-:

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No, it doesn’t say it all. Everyone dies of something - you can die of drinking too much water and point being he ignored all advice to change his lifestyle and wouldn’t seek medical attention or treatment and continued to push his body beyond endurance levels.

The recent sudden deaths during endurance events I think illustrates, certainly to me, that there may be a few who have the physiology for endurance events - but the majority of us don’t.

My step grandson is an elite, endurance athelete and I know the physiological tests he went through before he was allowed to train hard. He is carefully monitored and is knowledgeable and knows when to stop, although he is impossible to live with when he can’t train!

It wasn’t AF per see which kills - it is ignoring your body symptoms and not taking sensible precautions and changing lifestyle to circumstances and believing you are invincible and not adapting which is dangerous.

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the sudden deaths during endurance events are not recent, they’ve been happening since these events started - they have gained prominance due to the increase in numbers of these events and numbers of people taking part. many who take part are undertrained sadly, or have not built up the level required.

as a (retired) endurance athlete - marathons, ultras and Ironman triathlon - with no particular physiology for it (I’m a 16+ stone ex rugby player) I trained to take part and compete. youngsters with talent are often monitored for best outcomes, but it’s the older ones who do these events for the challenge is where most problems lie.

AF is common amongst endurance athletes - maybe the cause of mine as I had no other risk factors beyond too much booze 🍷 - but nobody knows why this is. many theories but no root cause.

for those endurance athletes who develop AF it’s a bummer as we want to keep training to a high level but we have to adapt instead. but most of us are good at reading our bodies from years of experience so we adapt well.

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I think you made the point very much elequently than I........

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PS - I now have a wonderful image of you competing - based on your name........

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shall we say I was not a typical lean, mean, skinny whippet....;-)

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Indeed, I am aware of one Australian Olympic grade cyclist, and one UK London marathon runner whose deaths have been attributed to AF and who were being treated for AF at the time of their demise.

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Well said,hope you feel.better soon.Take care xx

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Well, John, you have made me look back, for I am sure I have been one of the 'well meaning' and have probably given the impression that AF isn't fatal, it doesn't kill you and you won't die from it.

I note that in a post from some months ago I did say of AF 'It may be debilitating but it's not a very fatal condition...'

At the end of that response, which moved on to things that most certainly can be fatal, I said '.. look on the bright side, be optimistic and hope for the best ,,,,. Being glum does one no good and if there are limited days ahead, they need to count.'

I don't think there is anything much more valuable than a sense of wellbeing. I have it right now but the frighteningly dire things said to me about AF and stroke some months before I joined the forum plunged me into deep despondency.

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We can all do a bit by boosting people up, by all means give them the feel good factor, tell them they are going to live for many many years, it is all good! However, read their post in its entirety, take on board their life style - and then inform them that they will live xx xx xx years.....if they adjust, that is NOT always happening.

Too many are overly sugar coating the condition in an effort to give the feel good factor. By doing so they could be doing more damage than good - that is my point

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Hi Rellim2,

While I agree that optimism is good, pretending that AF is a benign condition is not. Yes, it may kill, by “the company it keeps”

J

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I think many of us see AF as a wake up call. It can lead us into better and more prudent ways of living, and perhaps some of us may live on as creaking gates.

I have said before that I view buying green bananas as rampant optimism.

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I agree with your points John6 but you are not putting forward what people can do about the situation.

It takes time, when diagnosed, to work out how to get healthy and reduce AF as much as possible and in the meantime people need reassurance as their attacks are frightening if they are symptomatic and can be made worse by stress if they think they are in imminent danger,

I am one who likes to know all the facts- however alarming- as that's how i deal with things- but I do have an NHS background. When first diagnosed I remember going to a London conference - and sitting next to Ian (beancounter) at the afternoon patient's session. At that time we were allowed to attend the clinicians' session in the morning - which I did. I heard everyone talk about the increase mortality and morbidity caused by AF and then in the afternoon heard some of the same doctors telling patients AF was nothing and that 1 in 4 have it when they are older etc etc!1

But one doctor in the afternoon also told us it would takes 2 or 3 weeks of a very high heart rate before damage could be done to the heart ( not remodelling but acute damage) This is re-assuring as people then know the clinicians have plenty of time to get someone's heart rate down- even if they can't restore NSR.

Also, as Bob has said, lifestyle and dietary changes ( in my case increasing potassium in diet) can make great changes to AF burden. Being treated for sleep apnea or thyroid problems, dealing with a stressful life, losing weight ( but slowly as electrolytes can get out of sync with rapid dieting) and once people know they can help themselves the threat to morbidity and mortality can disappear - unless there are other underlying heart problems

So I think we need a balanced view and fr people newly diagnosed they need to know AF doesn't kill you if you take sensible measures- particularly of course AC.

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Tbh I did not expect the responses that I have had. Having said that, I will deal with it, as I mean well.

The only thing that I am asking of anyone - is to think. The amount of people who believe that Afib cannot kill you is staggering. On the basis of that, newbies who are telling us of their fears along with their lifestyles, are being told not to worry as Afib will not see you off. That is totally wrong if the caveat of telling them to make changes to that lifestyle, (unless medics say otherwise ), is not said.

It is obvious that (as many of us can testify) that Afib is liveable. However, the message in many cases is being put out that there is no real danger from Afib, only heart failure or a stroke is a problem.

I just do not get that mentality.

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Not everybody has to make changes to their lifestyle!

I have never been over weight, I have never smoked & I don’t drink alcohol.

I have always been physically fit and quite active...never to an extreme. I have low blood pressure and take no medication. (except for an anticoagulant because of my age)

I have had Afib for probably 40+ years.

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When I say lifestyle changes, in many cases it also encompasses work/home life. It does not apply to all, as we can only comment on the info that the poster gives out.

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you may in the minority of inherited AF? It is usually a final sign of other things

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Rosy, I found all that really helpful, informative and (especially in the issue of the length of time before a fast heartbeat does damage) reassuring too. Thank you :)

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I have always seen "afib will not kill you" with the caveat to the effect "if you treat your heart rate and take thinners". No one has ever suggested living life with a HR of 190, not only would that kill you it would probably do so in a very short period of time! The advice is good and accurate because many come here thinking there life is over or will be shortened because of an afib diagnosis and it's simply not true.

Jim

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I agree. I wasn't aware that I had AF until I had a stroke last year that was caused by AF . I am lucky to have survived so how can it not be life threatening ?

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Undiagnosed AF and untreated AF means you are at risk of having a shortened life span - that stands to reason - as you nearly found out !

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The real problem and the root cause of AF and numerous other health problems is western 24 hour non stop lifestyles coupled with an NHS that is largely geared towards treating instead of preventing illness ! In many traditional societies AF and all the other things we see today , obesity, diabetes, etc etc are virtually unheard of !

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See also "all treatment is for quality of life only".

(apart from anticoagulants that you have to take every day to stop you from having a stroke).

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John

I don't believe your opening statement to be true. I believe it to be a sweeping generalisation that's not based in fact: I've never seen a single statement response of that kind to any post from a newbie. Similar statements are invariably qualified with caveats and advice.

Therefore the debate you're generating is based on a false premise - supported by those who focus on the statement (which would include me if it were true) and challenged by those who focus on its accuracy (which includes me because it's not).

For that reason I think your point is unresolveable in the same way that most political debates are: because it's subject to interpretation of intent - as are most generalisations that omit their caveats and realities. I don't know if it's your intent, but in my experience those who post sweeping generalisations tend to have inflammatory intentions (yes, I see the irony in that statement).

Steve

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Hmm attack the poster by stating he has an agenda! You will have to do much better than that.

Your claim that my post is "Unresolveable", goes into the bin straight away.

This post was started with good intentions, there literally can be no other reason, as I am not promoting anything or trying to drum up business. The only thing that I that I want, is to see sound advice given out.

Prior to my post, it was only me who was seeing incorrect info being given out. There are quite a few who have taken umbridge to my post, that is unfortunate as it was made with good intent. The plus side is two fold, 1) there are others who do happen to be in agreement with me - so are we all wrong? It does mean that others who had not spoken out - are seeing the same problem. Onto 2) The proof of the pudding will be in future replies to newbies - that will be interesting, as no doubt many will now be watching. If you are bored enough you can also keep an eye on me, just to see what my apparent "Inflammatory Intentions" are all about.

P.S.You are reading too much into me - it's not about me!

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My first thought when replying to posts has always been 1. Do no harm, 2. Offer support ( giving support does not always mean giving information), 3. Try not to undermine confidence in the health professionals supporting the OP ( whilst offering options for obtaining alternative care if it seems appropriate), 4. Give a measured response, 5. Offer personal experience 6. Add appropriate sources of info

We all cope with life ( and the fact living is a terminal condition), in our own way and from our own perspective. With age comes caution, but caution may not be the way some people choose to live their lives.

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Well this has REALLY cheered me this morning. I am now anxious about being anxious and panicking because I am not losing weight. Should I walk more or shouldn't I? Forget that jog...too fat anyway and it will kill me! Pass me the bottle..oops forgot I can not drink...groan...may as well give up....or then again, I can walk out into the sunshine and stop worrying about AF.... BECAUSE WORRY IS THE KILLER.

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Don't worry, be happy. Play some music to jog, or walk, to. ;-)

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Jog?? Far too strenuous by the sound of things!

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Good to see such robust posts,to me this is what this forum is about,with various views,agreement and disagreement. Why? because Afib is such a unique and personal issue,from the outside you are completely normal to most observers.yet inside you can be absolutely bonkers!!!

As 30 year veteran of Afib,I can absolutely say that my life was ending when I was first afflicted,and as at the time not many medics could offer much reassurance,I was prescribed a daily aspirin and tranquilizers.

Self education was my only real option for many years,as I lived in fear, very slowly coming to the conclusion that no,this wasn't going to kill me,maybe the case with others, (not that I could find any direct evidence of this),and learning to accept this,along with breaking my addiction to tranquillisers probably rate as the 2 biggest achievements in my life.

My comment to John6 is that you are certainly entitled to you view and good on you,but if a "newbie" asked for my advise I would simply say

"In my experience Afib wont kill you, certainly not tonight,but that's not to say you should not do your own homework and reassure yourself....listen and take advise from the professionals " and wish them good luck on their journey.

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Bless you.

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Hi concup, In amongst the shrapnel that was flying around I missed your post. Your last paragraph partially encompasses what I am on about. Of course it is liveable. My point was; it is not, if advice given is so overly compassionate to the point of it being detrimental to the wellbeing of the person concerned. Another poster had also picked up some months ago that the same bad advice was being given.

If people are going to tell others that it wont kill you, then it must come with a caveat of ie "Providing you follow the guidelines of your Physician". It is plainly wrong to say to those who are into serious exercise "It won't kill you", you'll be alright.

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Yes I agree. It’s the damage that the Chaotic rhytham causes to the Heart. Leading tos possible Heart Attack and or Stroke.

I have had many procedures in the last 12 months, and now because of the damage, I have a Pacemaker and will very soon undergo an A V Node Ablation.

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My PAF has caused an enlarged atrium and leaking heart valves according to my EP

and its not as though i am in AF for days on end, as when it happens it is usually back under control in 24 hours. It was however happening at least once a month with heart rate 200! I'm on loads of meds including Apixaban

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I am fairly new to this forum, and find the many inputs valuable as the information I get from health professionals tends to quickly run out of usefulness. They say take this anti-coagulant (warfarin in my case) it will reduce the risk of stroke, take this beta blocker (bisoprolol in my case) it will reduce your heart rate (even max dose hasn't done much for mine), continue to exercise (how much they can't say), they gave me a cardioversion which worked for a few days then a couple more short periods over the next 6 weeks (which happened to include the post procedure ECG), since then I have had continuous arrhythmia though with a rest pulse well below 100, but peak heart rates up to 190 often during mild exercise. The medics haven't offered any further treatment so far and I don't know what to think about that.

I have liked this discussion because there is an inevitable conflict between advice and feelings sufferers are likely to have at times.

Be calm. Be cautious. Pay attention to your body and symptoms and act sensibly. That seems wise.

It is good to avoid both fear and complacency. Take the medicine unless you get your doctor telling you otherwise perhaps if you have some adverse effects or it doesn't work for you, and avoid extreme activity. Get on with your life as well as you can. Get help and advice when you need it. Talk openly about your feelings and accept that calm and caution can give you a good life, when fear and complacency will probably spoil it if either predominates.

Thanks for your inputs.

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My mother in law died two years ago. AF was given as one of the causes of death on her death certificate (she died in Charing Cross Hospital).

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How old was she?

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89. She had a stroke.

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Well that is a sad loss for you and I am sorry, but heartening for us. 89 is not bad going for someone with AF.

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I was diagnosed with AF 11 weeks ago and was terrified! I got in such a state of anxiety, especially while experiencing episodes, that I actually decided that if I died, at least that'd put a stop to the worry! This forum has helped me enormously with that anxiety. That, Apixaban and lifestyle change!

But I have to stand up for John here. It seems that there are different types of arrhythmia, and very zealous athletes who are addicted to their own endorphins and have certain types of arrhythmia may be making their situation worse. I've reread the post and I think that's all that was meant.

Medication, losing weight if we need to, and moderate exercise will all have a good effect, and consequently we can safely say "AF will NOT kill us" 😊

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It is refreshing to find another one who can read the post properly. One disappointment about this forum is that we do not appear to have an instant data/reference bank, this would clearly show/demonstrate what I mean - totally exonarating my intentions.

I never meant for this to get this many replies, although it is not a bad thing. A couple of members have completely gone off track, misinterpreting my intentions - I will live with that.

Anyway, the point HAS been made! Let us now see as to how advice is NOW going to be given, as they say - watch this space.

PS. Many thanks to those who read the post and my intentions properly.

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In the past, on other forums, I've had people misinterpret my meaning and it's made me quite shy to post. Now, if I do, I read and reread to check whether there might be a non-intended hidden meaning coming through! I wish I didn't feel like this but this is the trouble with the written word.

P.S. I've known people who've ruined their health through excessive exercise and I say everything in moderation ... as one doctor friend once said to me "Jogging makes you limp!" Very subtle! 😂

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It was never my intention for this post to get the response that it did. If I have upset anyone, then I am sorry. However my intentions were for the best.

I would like to leave it with part of a post that I replied to Hilly.

One disappointment about this forum is that we do not appear to have an instant data/reference bank, this would clearly show/demonstrate what I mean - totally exonarating my intentions.

I never meant for this to get this many replies, although it is not a bad thing. A couple of members have completely gone off track, misinterpreting my intentions - I will live with that.

Anyway, the point HAS been made! Let us now see as to how advice is NOW going to be given, as they say - watch this space.

PS. Many thanks to those who read the post and my intentions properly

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I understand what John6 was trying to say (I think) but his wording in the header was horrible and explanation afterwords didn’t go into great detail of what he was trying to say. If someone was coming here for the first time that header could do great harm. If what I think John6 was trying to say was, if you don’t take care of yourself and do the right thing by your body af will have a major effect on your life expectancy. I get that and that is right but It should of said in there as well, if you make the right changes and take care of your body af will not kill you. So if you are new and are reading these post and are thinking in you head right now “will af kill me or not” ..... calm down, take some deep breaths and be assured that if you have no other heart issues and you are under the guidance of a ep doctor and are resting and taking the proper medications or getting the proper procedures to help your situation then NO af will NOT kill you but if you disregard what professionals are telling you and continue on the path that got you here in the first place, then you could be doing great harm to your future.

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Thank you! That was the point I was trying to make unsuccessfully. Three weeks ago I would have read the header and the first three sentences and ended up even more hysterical than I already was.

It was at the beginning in particular worded poorly and yes that header is horrible particularly to somebody coming here for the first time.

The same thing could have been said in a more empathetic way, taking in to consideration that newly diagnosed patients would almost certainly read it and would be very fragile at that moment.

We learn quickly enough the implications of this horrible condition I have already been made aware of the points in the OPs post through my own research over the last week or so. I just think there was a total lack of empathy in some of the wording and that heading as you quite rightly say is horrible for anybody just visiting for the first time after being diagnosed.

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Sorry that was meant for nbpa1234 :)

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People often mention 'resting' on here. Can you explain to this newby what you mean by that? I get so confused. First it is 'get plenty of exercise' and then it is 'get plenty of rest'. Do you mean a decent nights sleep or should we rest during the day more?

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A great night sleep is a great start. But what I mean by rest is not to over due anything. If you were recently diagnosed and have no other heart conditions and are just starting to find out what medication works for you start off slowly getting going again. When I first started taking medicine I walked for a month before I started jogging again. But the biggest thing to rest in all of this is your mind. I believe that stess is a big trigger for so many. So resting your mind and doing breathing excercisees can help you rest your mind.

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Yes. The one thing I have discovered is anxiety is the trigger and I believe anxiety was the cause. I have now quite a few friends with the same condition and they are all anxious people. I don't jog (never seen the necessity) and I don't walk enough. The advise is so conflicting..rest..walk..etc. I do a lot of correct breathing, because I sing. At least my lungs get a work out :) Thanks for the advice.

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I am sorry but I really don’t see the conflict - you need both.

Exercise does not mean full on training but keep moving. A 15 minute walk twice a day was the recommendation from my EP - some gardening - walk to the shops - climb the stairs instead of taking the life - any exercise that moderately increases your HR has shown to improve your health overall and Heart health specifically.

Getting plenty of rest - good nights sleep -8 hours if you can, don’t push yourself and listen to your body - if you get tired - rest but relax as well. No point sitting and worrying so do things you enjoy - distract yourself - any enjoyment produces endorphins which counter the stress hormones such as cortisol Which are produced when we get anxious or angry or stressed.

Dr Chaterjee’s book - The 4 Pillars (of health that is) has some wonderful suggestions on how to do both.

Stay well and I hope that helps.

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Well, if I am in high rate afib, just getting dressed takes me into perspiring, out of breath and my head buzzing. I have to just sit. Fortunate for me here in the US, I can go to ER at the Arkansas Heart Hospital and have a DC cardioversion within a few hours and be home if all my labs ok and been NPO. Absolutely not possible to function. Mine is vicious and uncontrolled, each case is so different. In the beginning 4 years ago, I was so uninformed by my first cardiologist!!!!!! Yes, he allowed me to do damage just because I did not know of better care that could have been done, the result is massive scarring inside my atrium from poor medical care.

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So sorry to hear about your situation. Have you found a ep you trust now? Have you considered an ablation? I had that same feeling while I was in af. When I would stand I would get sooo dizzy and I felt everything in my chest, just awful. It is very important to get the best of the best that is in your area. Don’t settle! Always get a second opinion even if you think the first doctor was great. Just to make sure. I went to 5 ep’s before deciding on the doctor I chose to do my ablation. In the US this can be done but from what I have read here it’s more difficult elsewhere.

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I had my first ablation on Jan 5 of this year at the Cleveland Clinic in Ohio, that is when I learned about the unexpected scarring they found. They were unable to complete the ablation, as I developed cardiac tamponade and was in icu. I have had two DC cardioversions since then, March 16 and yesterday. I am flying back to Cleveland Clinic this Wed for follow up tests. He was unsure about a another ablation.

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Yes, I have two EP Dr, one in Arkansas and another one at the #1 heart center in the US. My primary care physician is responsible for asking me, would I like a second opinion. My first encounter and diagnosis was in ER and a regular cardiologist is who I was treated by for the first year, that was a mistake!

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You are in amazing hands now and I hope you feel better soon. Cleveland clinic is the best of the best.

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John, Since my first reply I have been monitoring this thread and fully understand why you have had the type of response that you have. I can see very well that you actually share my views on athletes and stress monkeys (yes and gas monkeys) and the need for life style changes but this is in itself an emotive subject. Sadly the medical profession compound this problem by telling people that can carry on as before or even start training again a week after their ablation whereas I would be screaming something quite different.

Your wording was ill advised by all accounts (although I accept its intent) and further confused by the inaccuracies contained therein especially regarding what causes a heart attack but I do accept that this is not always understood. I have also heard people on TV programmes like "Inside the Ambulance" saying things like "John has AF and could have a fatal heart attack" which has me screaming abuse at the screen.

AF is just one arrhythmia and my last comment was aimed at such a WPW syndrome which is potentially fatal as well as SAD or VF . As others have said AF is not directly likely to be fatal and I believe that is still the message we should be promulgating especially to new members. Regarding the "change your life style" message this is difficult. I was reported for abuse a while back for just that when I joked that there were no prizes for fittest ------ in the -----yard.

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Bob,you are missing the point. As much as there is criticism, there are others who feel the same as myself. For that to happen, then there is a fault in the advice being given out.

As mentioned if there was a collation of past posts of the forum - it would be there and plain to see, unfortunately to my knowledge they are not. However, I am sure that many will be monitoring future posts - it will be interesting to see what is now put out.

I believe I have made a point that others were not taking serious.

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John in conclusion, what exactly is your point you are trying to make? Is it that people who think AF is nothing and don’t get proper treatment will be sorry they didn’t take care of it correctly or is your point that you are doomed no matter what you do. I read everything that was typed and still don’t know where u actually stand.

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Sorry I did not get back to you sooner. As you can see we had more than a few replies.

My point has been made in other posts, this is basically it; We had a couple of younger newbies seeking advice. One of them used to get up at 4.00am to exercise, the other was heavily stressed with work. In both cases they were told Afib will not kill you, do not worry etc. My point is that until everything has been cleared with the medics, then they should act with extreme caution ie do not continue extreme exercising, do not continue being stressed at worknow. They were not told that, it was carry on it won't kill you - I am saying that info is incorrect without medical approval.

Since I originally posted, I have (with the help of another), come across a similar post from some months ago. The poster voiced exactly the same problem re the way newbies are told that everything is alright.

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Jon there is a collation of previous post - just type a key word into the search box.

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John I think you are too anxious about the effect of reassurance given to newbies. We are not s medically run forum but between us we have a lot of knowledge and experience. I could find many examples where people have added advice about caution to another’s post and the overall contribution to newbies is very sound!!

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Hi rosyG, Since I posted 20 others have ticked the like box. It indicates that others are also of a similar mindset, who up and until now had not spoken about it

It also came to light that the same question had been asked by another back some 5 months ago, demonstrating quite clearly that another also spotted the problem.

To cap it all, a medic has contributed a very good post confirming that you need to take your care seriously, otherwise it is/can be, bye bye.

If I am "Anxious", then it is only for those who should receive proper advice.Unfortunately whilst advice has been given in good faith, it could also make their condition worse by not putting them on shall we say an amber light, most certainly that as opposed to carry on, only "their medic" should be giving them a green to go.

We can all pass on (our own) personal experience of this condition, however I feel that "Personal Experience" should be emphasised, as we are all different and most are NOT medically qualified.

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I didn't realise it was a likes competition but if it is Bob is winning because he's got 26 on one of his replies :)

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It never was a competition - I was merely pointing out that it is not just me.

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If you believe that you was correct in what you said and the way you approached it why do you feel the need to check your likes let alone mention it. People who stand by what they say do not care nor as a rule spend time frantically trying to justify themselves. For every person that agrees there will one that doesn't that is life it is called a difference of opinion to which we are all entitled. I've finished on this post now as looking at the amount of replies you keep firing out you aren't going to stop until you have had the last word and it is starting to border on juvenile. Good night :)

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My reply to you was out of politeness, as you obviously did not understand the reason for mentioning the stats - you still do not.

As such I don't have to justify anything - my point has been made. Good night and sleep well.

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I totally agree with you John and although people want reassurance they also need to know the facts!!

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Thank you. I feel others who prefer not to know, or face facts, are indirectly/potentially sending others to further bad health or worse.

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If you look at my first reply to you you’ll see I agree with a lot of what you wrote so it’s not surprising you got several likes. My point is it’s not a complete solution and I tried to balance that in what I wrote. Good to have a debate of issues with all involved

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It was not a case of "likes" as such. I was trying to show that others were like minded. As much as I am the one who brought the subject forward, there are others who feel the same ie it is not just me.

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Maybe some do not have to change their lifestyle and Yes, the Drs seem to tell you, go on and work etc. Now, I disagree with that because the way I worked was very long hours, always have. I have had to make myself cut back, It gets very very frustrating ending up in ER for cardioversions!! If crying would help, I would have already done it. I can be perfectly fine, then, boom, there the curse is back! I love going to Mexico, but have not gone in 4 years. Each has their own story, whatever it is, I think this site is awesome. We all have experienced different aspects, but certainly we understand our own experience and the degree of impact.

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Not a particularly helpful comment. A bit like saying a car won't kill you! Almost anything could kill you. It's not about will or won't but about risk. People's background health is so variable and the form that AF takes is so individual so you have to look at individual risks. We pretty much know that there is an increased risk in stroke but how significant is still depends on how low it was to start off with. So we have anti-coagulants to reduce this. My AF is intermittent but frequently occurring. My heart rate is erratic but never that high and rarely above a hundred. It just goes in faster and slower clutches of beats which are more or less symptom free.. My cardiologists have said that this will not increase the risk of a heart attack. They have said that potentially over a long period of time my heart could enlarge and this would increase the risk. I suspect each case will have a different risk.

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True to a point, but one can not live in a shell. My AFIB was bought on by excessive exercise with supplementation. That was 17 years ago. Since that onset I have had 2 ablations, one in 2014, and the last being 9 months ago. I still exercise, as life goes on one must be prepared to deal with any health issues related to ageing, and exercise does indeed contribute to life expectancy. I have found that alcohol for me is a trigger, and as such I stay away from it. AFIB is not a death sentence, although the chances of stroke are higher one's life should not be lived in fear. I am in sinus rhythm, exercise, take required medications and live life to the fullest. Respect the condition, but do not let it overcome you

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My mother is the one with afib for over 25 yrs. Sometimes her episodes last 13 hrs or more. She has episodes several times a week. She is on a blood thinner, metoprolol, and Lasix and has a pace-maker for syncope. She was diagnosed with heart failure 3 yrs ago. While afib has not “killed” her, it has taken a toll on her heart. She has cardio myopathy also. She was offered amiodarone or an ablation, but she turned it down. She was diagnosed with afib in her late 60’s and is 92 now. She doesn’t complain about it, but I know she struggles because she gets hooked up to a computer via her pace-maker when she visits the cardiologist and this tells the story of her episodes.

For many years after diagnosis, she continued to play golf and remain active. She is 92 now and slowed down. This may be the normal course of aging for her. Would she have had HF anyway? One never knows. Point is, she continued on with life and don’t let it slow her down.

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That’s a great story nymina about your mother. Not her health but her strength and to now that she is 92 and still with you. I’m sure we would all sign up to make it to 92. My grandfather has similar heart issues and he passed at 86. They have made such big advances in medicine and continue to find more and more about af and all heart issues. Ablation is still fairly new and for younger people with afib if caught early enough the future is very promising.

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I never for one moment thought my post would attract so much negativity, neither did I think that it would have so many people that would misread it. For the sake of those who obviously only read the title, and those who misread it, I am prepared to disect it. It is not an indulgence, as I hoped some posts back that it would have been put to bed by now.

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"Afib will not kill you - oh really!" - The title was meant to catch your eye - read on, you still do not know what this is about......no suicides or being distraught.......yet.

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"A few well meaning contributors often say to newbies - do not worry Afib will not kill you!" Read on, as I go on to making a claim.

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"This I feel is misleading others into a false sense of wellbeing. There will be people who hang on to information like that, treating it as a green light to carry on as they have always done. Particularly young people who exercise extremely every day, or for that matter those who are incapable of thinking things out for themselves."

Taking the aforementioned entirely into account, what is controversial? As it is so far, it would be the truth. At this stage I am referring to two groups of people.....Hmmm, I wonder who can work that one out?

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"As unpalatable as it is, we could not live with an elevated chaotic heartbeat in excess of the medically accepted norm. Whilst Afib may not always kill you direct (personally I believe that it can & does), it is nevertheless the root cause of heart attacks or strokes that do and can kill you/I."

The first part is abundantly true. The next part is a line saying"Afib may not always kill you direct" - the next part is my own view. I do think that you can get any fairer than that, as it is saying that there is another view!

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"I would also add that we are doing ourselves no favours, by going back along with the view that it will not kill you. Hence the reason as to why this condition is 100s of years old - with no cure. We have in many respects been relegated to a non threatening life condition - totally wrong".

The above is quite obviously a personal opinion with any newbie being fully aware that unless stated - it is not a medically backed opinion.However the latter is imo totally true.

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"Unfortunately our condition gets hidden amongst "Heart attacks & Strokes", whilst the real killer is getting away".

The bottom line on the above, is that imo our condition is being hidden in the stats amongst "Heart failure & Strokes". The condition that we have, is not some new kid on the block, as it has been around for hundreds of years. On that basis, you have to ask the question as to why countless other horrendous diseases/conditions over the centuries have been cured......and yet they know so little about ours - the answer imo being.......we are hidden.

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Where is the controversy - I just cannot see it.

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That some disagree with you does not make them incorrect and you correct or vice versa in your opinion which is all it is. You say that those who disagree have misread and/or misunderstand you. I haven’t; I disagree with you and I’m sure you don’t intend to patronise but that is increasingly how you present. Perhaps time to move on.

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A poor reply if I may say so. The post has been taken apart and explained after many members ragged it off. The silence is deafening when I ask what the controversy/problem is all about.

I did not patronise anyone, however, it seems to me that many did not read the post properly, to then jump on the bandwagon of slating me.

I invite you to take the post apart in a constructive manner.

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Patronising and ill informed. You can’t help yourself being superior. Thanks for the “poor reply” and repetition of your earlier dogmatic posts without any evidential authority. I suspect you’ve been on here before and in other guises. Good night and sleep well.

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Take the post apart!

There is absolutely no point in trying to bully someone off of the topic, my skin is thicker than that. If my Afib allows me....I will sleep well - I hope you do too.

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I will 😊

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neither can I!!

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I guess what I think the controversy is is what is your point with this post? It’s very doom and gloom. Just look at the post above from nymima. Her mother is 92 and was diangnosed in her 60’s. Opted to not have an ablation yet she is 92 years old .... not many people live to 92. They are learning more and more about how to treat AF and ablation is fairly new and if her grandma is still alive at 92 with all those heart ailments they must know a little something about our conditions. I just believe that this blog helped me out so much when I was first diagnosed and I get what your saying that people should change there lifestyle after being diagnosed but the rest i just don’t know how it would help anyone in there search for answers. Just my thought.

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Please point out where the "Doom and Gloom" is. The post has been taken apart and explained - I really do not know what you are on about.

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Sorry - What do you mean by an 'instant data/reference bank?

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Ho Polski, On other forums they might for instance have different (headed/titled) subjects. In this forums case you might have....Heart, Lungs, General health etc. Each topic raised, is there to see on an easy to see basis, along with replies from members. In many respects it is like an instant library to what has been asked/raised on the forum.

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John I don't know what you mean in your post above , this is a forum specifically dedicated to AF not any other health conditions and anyone looking for a topic related to AF can use the search facility located in the box above . It is an instant information recource if used correctly.

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Thank you. The question was asked earlier as it is not laid out as in other forums. The information is more or less there to see without having to feed in clue style requests.

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Well let's get this in perspective . A little girl at the school where I teach, died of cancer yesterday aged just 6 . Cancer can kill you for sure.

This forum has helped me considerably and it is for us who read it , to also do our own research about our condition too, and not just rely on what we read here. There is enough complaining and moaning in this world right now, enough hunger,which can also kill you, and enough wars, that also kill many innocent victims! so please let's not ruin a forum where I am sure the majority of the posters are coming from a good place. And, the sun is shining too!

With good wishes

Sarah

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I like your style Sarah, it must be so hard to watch a child fade away and to witness the devastating effect it must have on her parents, family and friends. Having worked at the Royal Marsden, I truly understand the grief.

For many though, with the possible exception of Manchester United fans, today has been a wonderful day for so many folk around the country and as you rightly say, the sun has shone all day, especially at Windsor.

As far as the forum is concerned, when I joined around 4 years ago, there were less than 2000 members and since then, it has clearly grown in stature and because of the commitment members have given to help those who suffer from AF, it will continue to flourish and do what it was designed to do, share knowledge, experience and give hope and encouragement within our limited capacity, to those in need at the very time they need it most.

We all know that with any group of people their will be differing views about how things should or should not be done and very often those views can be helpful and constructive, but if poorly defined, they can be divisive. However, I think we have to accept that for the most part, everyone wants to do the best they can to help fellow sufferers. One thing is for sure, no one individual, no matter how well intentioned, will influence or change the way help is given, that includes me, BobD and Uncle Tom Cobley and all!

I think you can be confident, that nothing that has been said today will have any lasting effect on how we try to look after the people who seek our help, of course, it is up to them whether or not they accept that help, which is exactly as it should be.

I can imagine that you are dreading Monday morning. I and everyone else here will be routing for you and the little girls class mates........

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"One thing is for sure, no one individual, no matter how well intentioned, will influence or change the way help is given, that includes me, BobD and Uncle Tom Cobley and all!"

And if you are wrong, that would be a very arrogant stance to take.

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You are right, it would.

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Me also. I didn’t join a Stroke Group after mine as I didn’t want to be defined by it but this group has been an emotional lifesaver with everything it offers. Thank you, everyone 😊

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This was posted by another member 5 months ago!

The same/similar question was asked - it is obviously a problem for two different members to raise the subject as they see the same misinformation. The last paragraph is very fitting.

P.S. The offer is still there for all who have seen things in my post that are not there - please point them out from the post that I have taken apart......and explained.

AF won't kill you

Badger25Hidden 5 months ago 22 Replies

I have read this many times in this forum. And find it reassuring.

Could someone explain whether the statement needs to be qualified.

My understanding is that persistent rapid AF may over a long period cause cardiomyopathy leading to heart failure. This is the basis for taking rate control meds.

And of course without anticoagulants we may have a major stroke.

Neither situation is inevitably fatal but can be.

Can we modify the aphorism to say AF probably won't kill you but might if you completely ignore it. As is, the statement might encourage complacency, both in patient and doctor.

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Is there a connection with you and Badger25?

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None whatsoever

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What a coincidence that you refer to Badger25’s post out of the many folk on here.

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One thing I do not do is to tell lies (not that you said that I do). Please accept that I had help from another - I will not be naming them.

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Would it be rude to welcome Oyster, Badger25?

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That might have been me - please let’s NOT revisit that one. Badger has left but his post was relevant to this discussion.

Best wishes.

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Is john6 Badger25/Oyster? sounds very much like him

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Part of the trouble with this post/debate is that people are NOT reading it properly......."CDreamerin reply to NickiC

4 days ago

That might have been me - please let’s NOT revisit that one........... Badger has left....... but his post was relevant to this discussion.

Best wishes.".

Badger..........has left the building😁

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....A quote from a post by 'Badger' oh dear there is no more to be said....

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NO Doodle - this is NOT Oyster/Badger. Please do not misinterpret.

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Twisting things is not a good trait to have 😩

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Yes, persistent AF with rapid rates can and will eventually lead to death, if left untreated. There is no conclusive evidence how long this would take, as the majority of patients will self convert.

Death from this arrhythmia is rare and due to several factors that are different for each patient. Most commonly, non compliance with treatment.

What you don’t include in your statements is that many patients are cured by ablation, and many have no further AF with medical management. I have had many patients who are 10-15 years post ablation, off all meds, completely AF free. Also, many who have never had another bout since starting antiarrythmics.

We don’t have concrete answers regarding this disease because although we are so much more advanced in our knowledge, reasearch and treatments of it, we really don’t know what causes it and who will be cured and who won’t. The current statistics are the best we can do and I have no doubt within the next decade we will see cure rates vastly increased.

Just so you know, in the right patient (paroxysmal AF, no other cardiac factors, new onset of symptoms), the treatment is actually aimed at cure. If you’ve been AF free off all meds post ablation for 10 years, I agree that is pretty much cured.

Having said that, I have seen permanent AF patients 5 years post ablation continue to be AF free.

So what’s the bottom line? Get diagnosed, always protect yourself against stroke and heart failure by taking your meds and adjusting your lifestyle, work closely with your doctors and get as much info as you can on your particular type of AF.

And don’t give up hope. Giant strides are being made constantly and there actually is a light at the end of this long tunnel.

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Thank you for this informative and measured response

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Hello Quilafizz, your reply certainly reflects the information I have gleaned from listening to many EP’s and cardiologists over the past 4 years. If you do not mind me asking, do you have a medical background?

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Of course! I have been an Emergency Medicine Physician for 21 years. I work in a major trauma center that is also the receiving stroke, neuro trauma and cardiac receiving center in the county. I am also a patient with AF. I didn’t get diagnosed for 4 years because I had 1 episode with very rapid rate (180+) for an hour or so every 9 months.

I was seen by a few of my interventional cardiologist who said they couldn’t find the arrhythmia and thought it was stress, which I found insulting as I deal with AF daily in the ER.

As AF begets AF, my arrhythmias began happening very close together and I immediately sought out the best EP’s in the county. I was finally taken seriousiously , placed on Flecainide and Eliquis, had my mitral valve (the one the previous cardiologist said was normal on echo, which it wasn’t. I suffered from a serious bout of rheumatic fever as a kid) repaired, then had a second surgery for a PVI ablation.

Thus, I have taken this up as a full time subject.

It’s unsettling how much information negates other information. I can see why there are arguments and confusion and it’s no one’s fault-we just can’t give exact answers because every patient is a differen challenge, one which may or may not have a great result. I finish my blanking period in 2 weeks, then off all meds. Will let you all know if I’m one of the lucky curable ones!!

(Fingers crossed, because that ablation sucked!!!

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Thanks Quilafizz, wish you well, please keep us informed or progress.....

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Thank you for posting and sharing your experience and expertise, Quilafizz. For someone unmedical (and often confused!) like me, it’s incredibly helpful.

Really hope you find you are indeed one of the lucky curable ones! Do let us know how you get on - and please keep posting :) x

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Oh well one thing people cannot call you - is a man of few words. Just to remind you......

FlapJack

FlapJackin reply to john6

a day ago

This is going to be my last word on the subject.

lol.

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Thank you for your time and input. I am sure that many will find your professional comments a great help - I know that I will.

Good luck with yours - regards John.

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Phewwww!! Well I certainly learnt.a few things and read everyone's comments There's no doubt this condition of ours brews up alot of discussion and helpful advice. Thanks to you all for this interesting post with it's replies 😛

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I'm out of popcorn.

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Good one🙊

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That made me laugh out loud!

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Bottom line with me is I go by what my doctor says and how I feel and when the Lord says it's time to come home I say I'm ready . There is a lot of good here but one still has to listen to the heart specialist and take it from there .

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Yes sir, I agree that when the Great Physician calls me home, Im outta here!

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Hi - can I suggest that you could have triggered quite a different discussion had you put your original post in more positive terms, without the critical/judgmental/dramatic tone? For example you could have said something like 1) you know how important it is for people newly diagnosed with AF to be supported in dealing with their anxiety 2) you understand that people with more AF experience naturally want to reassure 3) you suggest it's helpful and necessary to also include the importance of addressing lifestyle factors e.g. excessive exercise, overweight that can affect the risks associated with AF. But maybe you enjoy stirring and dividing? Which, to me is a shame, as this distracts from the actual issue.

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Do you know what, I could have put it a multitude of ways.....and someone would have been upset. The bottom line being, (I have got to be careful here), shall I say our demise, is a very emotive subject.

However, the title (call it whatever), did bring together a very lively discussion. I feel that on a number of counts, I have been vindicated in bringing this to the forefront, as it could save lives as opposed hastening departures.

You can tell by some of the replies that many do not want to face up to reality - to a degree I understand it, but I do not agree with it.

This subject/topic has gone on far longer than I ever thought, or for that matter wished for, as such I would like to thank everybody who made an attempt at sensible input. If anyone sees the topic locked - it is because I have requested it.

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Quote John ''You can tell by some of the replies that many do not want to face up to reality - to a degree I understand it, but I do not agree with it.''

John I can only assume you have never experienced the severe symptoms that some of us with AF experience which leave us in no doubt of the seriousness and 'reality' of our condition. I am sure many like myself have felt they were about to have a heart attack /stroke at any moment when an episode of AF started. It was very reassuring to come on here and realise that were unlikely to drop dead at any moment and although our condition could be serious there is help and we can get through the shock of being diagnosed and have a good quality of life.

I doubt very much that anyone here has been led into ''a false sense of wellbeing'' as stated in your earlier post, I have never seen it happen.

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"John I can only assume you have never experienced the severe symptoms that some of us with AF experience which leave us in no doubt of the seriousness and 'reality' of our condition."

If you care to check my past posts you will see that I experience them practically on a daily basis. Anything from seconds, sometimes minutes, also many hours......I only wish you (were right) on your assumption - I would be very happy.

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If you want anxiety use the forum. If you want peace of mind seek PROFESSIONAL advice.

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Nice post. Thank you😉

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