AF will not kill you ????

I get quite confused when people say AF will not kill you, my A F caused me to have a heart attack and could quite easily have killed me.

Being on anticoagulants does help but is not fool proof.

I have also heard of people suffering stroke also caused by AF that could also have killed them.

It's the life threatening things AF causes that's the danger.

I have had one unsuccessful ablation that was the most horrendous experience of my life and have just cancelled a second one preferring to trust the warfarin and biosprolol as and when.

13 Replies

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  • Hi Lainie

    Well it's still true, that for most people AF does not kill you, and especially true for those who suffer from awful paroxysmal epsiodes, which feel like you are dying even if you are not.

    However you are right, AF can cause heart problems and that can certainly contribute to heart attacks, and no-one hides from the fact that anyone with AF is at 5 times the usual risk of stroke, and that any anti-coagulant will not bring that back down to 1 times the risk. It's still there but lessened.

    I'm sorry to hear about your ablation, personally not had one, but many have and although no-one I suspect would describe it as pleasant, many have had AF free lives afterwards and feel a lot better after their ablation.

    But I agree with your statement "It's the life threatening things that AF causes that's the problem" Yes of course, especially stroke, there's more disagreement or rather perhaps less understanding on the relationship between AF and heart disease or attacks. There is certainly a relationship, but which causes which? AF is very common as a side effects of heart disease and heart operations.

    The research here has to try and seperate those who perhaps would have had a heart attack anyway from those who have AF as well, as I said the relationship is a complicated one.

    You sounds like you have had a horrendous time, all I can say is that everyone here is a sufferer, and you've come to the right place to vent your feelings.

    I wish you very well indeed

    Ian

  • Thanks Ian,

    I was not venting my anger,lol,was just stating facts really, I do feel for youngsters who are frightened, we all know how scared this can be until you find a way to manage it.

    my heart attack was a direct result of a clot fired off by AF I had been taken off warfarin 6 months earlier, I hasten to add I was straight back on it.

    I am told my heart is actually in good condition and I am trying to keep it that way so more ablation a scare me so much as I can only imagine with each one the area treated must become more fragile.

    Anyway nice to get some views from fellow sufferers.

    Cheers Elaine

  • agree with Ian i had cardiversions ablations and open heart surgery but still alive and well still got AF and arrythmias too. I was trying to reassure a 20yr old who is frightened and advised to read AF associations information. I know about stroke and heart problems too

  • We are all individual and have different needs and expieriences.

    I am all for reassuring newly diagnosed but what they expierience may be totally different so people need a holistic and realistic view

  • Yes I agree with Ian that you have obviously had a very bad time which generally is not typical but still afirm that AF alone does not kill you. Your problems may well have come in a different order so what caused what is hard to define. Stroke and AF really only became understood post 2007 when anticoagulation started to be a prime consideration of treatment. Prior to that many people sadly didn't even know they had AF till they had a stroke.

    I have had three ablations and been AF free for seven plus years and it does seem that you have been very unfortunate and mostly not the norm as many people have greatly improved quality of life after ablations. The vast majority of people with AF learn to live active and productive lives so one must be careful not to generalise. Remember that until a few years ago AF was considered but a benign nuisance and likely not treated at all. We have come a long way since then.

    Bob

  • Yes I agree and hopefully there's lots of new treatments in the pipeline Bob, less invasive and with fewer horrendous side effects.

    I will hopefully plod along dealing with each episode as it happens until a better option comes along.

    I thought my consultant was an EP as I was told he specialises in Ablations at Leeds infirmary but having followed you're advice I looked him up on AF website and it says he's a specialist consultant cardiologist , doesn't mention EP,

    Please remind me what E P stands for.

    Elaine

  • If he does ablations then he must be. Sorry I don't know your history but have to say that all three of my ablations were easy and less of a worry than going to the dentist for me.

    EP is electrophysiologist but not everybody uses that term.

    Some people are just unlucky and some have unusual physiology which complicates procedures but again I say one must not generalise and think ablation is bad. I know of little development "in the pipeline" at present and one leading EP told me a while back that he thought treatment had reached a plateau. The last wonder drug a few years back turned out to be a damp squib but work goes on. Learning and accepting life with AF does seem to be the $64000 question but thankfully many people do manage it to a greater or lesser degree. A million or so in UK alone. One day we may understand better why there is such an explosion of AF, or is it just that now we diagnose it better?

    Bob

  • Why was your ablation 'horrendous' Elaine? It shouldn't have been. It should have been a pain free experience. If you were sedated rather than having a GA, there might have been some discomfort at the outset as they adjusted the juice levels but overall it shouldn't have been painful. My experience of ablation (at Leeds) was extremely positive. Can't wait for the next one! (I don't mean that of course, but wouldn't hesitate if it became necessary.)

    An ablation is a godsend for so many of us - the closest thing we have to a cure for AF and as technology and techniques improve it will probably become just that. What a shame it will be if your one time bad experience closes that door.

  • I was not given any sedation until I shouted out in pain and that was 1/2 hour into the procedure. I know exactly what happened as my follow up was with a registra and she went through my notes with me and gave me all the times and exactly what and when they gave me anything. I was also told that my sedation was morphine and a memory erasing drug given alternately. I went into AF and had to be cardio verted, but of course I have no memory of this.

    However when I saw the consultant he was adamant I was given sedation as soon as I went into the cath lab but I know this was not true.

    They have offered to do the second one under sedation but having gone through it I am too frightened.

  • Hi Elaine

    Sorry you had a bad experience of ablation, my 2nd ablation didn't go exactly to plan either but I couldn't call it a horrendous experience as I had every confidence in the team who were performing the procedure. when all the drama was over I have no more AF and consequently do not take any meds.

    I know of 1 person who died directly from AF - he was 26, very fit and an ex marine with the ethic that you push through the pain to an extreme. He died because he completely ignored the symptoms of AF and continued to train very hard indeed, whilst in AF, until his heart stopped. Cause of death was heart failure. I know a lot of people with AF outside of this forum and there over 3000 on HU site who have lived with AF for many years, Ian being one,

    I don't know if you caught the Radio4 programme recently talking about use of statins? It was mentioned there that the number of heart attacks in young, very fit and otherwise healthy individuals is surprisingly high. The causes of heart attack are numerous and complicated, you know the cause of yours and can take medications which reduce your risk so hopefully it will be one off event for you, which you survived - happily.

    Taking the medications for me was far more horrendous than having another ablation and now I have another condition which means all anti arrythmia drugs and beta blockers are contra-indicated so that is not an option if AF ever returns. So far, so good!

    Everyone has a different experience of AF and I agree with Ian & Bob, it is the consequences such as throwing a clot which can cause the devastating heart attacks or strokes. Apart from the ex-marine, my own experience and being on this forum I have noticed that the biggest issue is the fear that is experienced when coping with AF. Fear will have long term physiological as well as emotional and psychological consequences and disables many from having fulfilling lives and it is inevitable for many first diagnosed with AF to panic and think it is going to be life threatening, hence the phrase "AF will not kill you but it may feel as though it will" is meant to reassure newcomers that any people find successful treatments or adapt to living with it.

    Very best wishes Susi

  • Hi Lainie, I read your post with interest.

    My husband was admitted to hospital within a few hours of going into fast AF, mainly because he was unable to breathe. He wasn't given anti-coagulants during the five days he spent in hospital, only Bisoprolol and Digoxin. They never got his AF under control. After four days they found he had a blood clot in his heart, so sent him home still in AF. We collected the anti-coagulant on the way out of the hospital. He literally sat on the sofa for a month scared to move, with me praying that he stayed in AF, as a return to sinus rythm with one strong beat could have sent the clot spinning off and him into oblivion. He did.

    The stress we both experienced during that month waiting for the clot to be reabsorbed so that they could cardiovert him was horrendous.

    I'm still angry that he wasn't given anti-coagulants early on during his hospital stay, which would have prevented such a life threatening situation.

    Thats our experience for what it's worth, and yes, untreated AF can be dangerous. Untreated being the operative word.

    i don't mean to scare anyone by posting this, but this is reality, unfortunately. The good news is that we found out as much as we could about this condition and took responsibility for our own health, which seems to be working so far. No AF for months now, and the only drug he takes is Apixaban.

  • I am so glad you,re hubby is ok, I have had so many bad expieriences in our local hospital but treatment wise they were always quick with the anticoagulants.

    I am very sensitive to beta blockers etc and was given a high dose of them in A&E even though I had told them, instead of biosprolol they have me something else and the next thing I was being rushed to Coronary Intensive Care escorted by a Dr with a difibrulator and a syringe of Adrenalin.

    Not all of us have had good expieriences that's for sure.

    I still have days where I feel like my batteries have run out and I know I will still have times when for 3&4 days I will be in AF but I can rest and control it with low doses of Bisoprolol and so long as I know my warfarin is working I feel safer.

    If it gets more regular I will prob have no choice but to have a second ablation but I don't feel I need it now.

    I suppose the first Ablation has had some effect as before that I did have quite bad episodes lasting days with very high heart rate constantly but so far the last I had was in May so fingers crossed .

  • Hi Lainie,

    I guess we need to remember that we are all individuals and our experiences of AF will be different. Most of us, once medicated are taking some sort of anticoagulant which prevents us having life threading clots. I think we need to remember that people who don't have AF also can have strokes and heart attacks and that therefore we may be less at risk than the general population.

    A lot of newcomers to this site are in shock and very anxious and I think it is very helpful for them to hear how different people meet the challenges of an AF diagnosis and how different medications affect different people.

    Myself I would encourage a positive approach as I feel a persons attitude to this condition can make a huge difference to their experience and quality of life. I have found that even during my bouts of AF my meds keep my heart rate under control and I can carry on with life almost normally. I am reassured by now carrying a pill in the pocket for future episodes and have been told by my EP that I can have An Ablation in the future if necessary.

    I find mindfulness and meditation very helpful in creating a calm and positive outlook on life and feel blessed to have a condition that is can be so well controlled by treatment rather than a terminal and painful condition such as some cancers etc. and

    I look forward to a long and happy life with or without AF!

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