The time has come - to AC or not AC

This is a reflective piece as being an active member of this forum for some 3 years now and having informed myself about risks and strokes and having witnessed the outcomes of several family members who suffered debilitating strokes, I am not looking for advice of the pros and cons, rather I write about the difficulty and the anxiety of making the decision of whether to take ACs or not. I have just seen my GP because I have not seen my EP for 18 months and know we are about to have THAT conversation.

For those who haven't followed my journey - AF diagnosed in 2007, managed with drugs until 2013 when became very symptomatic, started taking ACs 2 weeks prior to ablation Nov 2013- not successful, back on drugs which then failed so 2nd ablation March 2014 - successful but didn't recover well - diagnosed with autoimmune disease - exacerbated by drugs, probably Flecainide. All AF drugs stopped May 2014, started drug treatment for autoimmune disease - Sept 2014 a currently taking Mycophenolate - immune suppressant developed for kidney transplant patients & Pyridostigomine - Acetycholineeterase (a neurotransmitter). Currently no AF but occasional episodes of Tachycardia (90-135) lasting anything from a few minutes to 18 hours. A few captured runs of ectopics but nothing much and considering all of above am doing ok and back to my Pilates exercising and starting to walk again (3 km or so is my limit). No other risk factors.

But...... I turn 65 and I am female - CHADsVASC = 2 which means my EP wants THE conversation re ACs. He has already stated that ACs are advisable but I am of a mind that says I don't want to take any drug which is not needed. (?????? The need ???????)

This is the time I have been dreading because it is the crunch time and I am anxious about making the 'right' choice - and of course none of us know what IS the 'right' choice for us until further down the line and the consequences of making the 'wrong' choice would be devastating. If I have a stroke I think death would be preferable - so Advance Care Planning comes into mind. I am not afraid of death, I am terrified of being dependent and not able to do much more than drool in a chair, I already do that as a side effect of Pyridstigomine is production of excess mucus including saliva - believe me when I say waking up to a wet pillow every morning is not nice!

If I take the ACs there will be side effects, I had gastric upsets with the NOACs last time I partook and I already struggle with the gastric side effects of the current meds and controlling IBS through lifestyle and diet.........And then there are the possible interactions to worry about..............

I just redid the CHADsVASC risk calculation on the AFA site and it calculated my risk of having a stroke this year as 2.2%, on the face of it that seems a reasonable risk to take? Does that mean I have a 97.8% of not having a stroke? For the gamblers and risk takers, those aren't bad odds. (breath on hold whilst I await the onslaught of replies from the pro ACers and the statistics experts amongst you lovely people).

I am not a 'worrier' but if I am confused and stuck in ambivalence, how much worse for those who have a tendency to worry and anxiety?

In the advance of offering treatments and prophylactics are the medical profession unintentionally, in danger of causing distress and anxiety in offering these 'choices'?

For once I don't have any answers, just posing the questions running around my head.

I would value replies which may help provide me with insights to help make my decision.

Best wishes CD

PS - my definition of ambivalence = 2 strongly but opposing held beliefs or emotions when the arguments advanced will cancel each other, leaving the person feeling impotent to make a decision,

44 Replies

  • The only thought I can offer is have your also done your HASBLED score as this may , just may, make decisions easier. I don't envy you your anxiety. I just went for it as I was told it was right so to do and never considered the alternatives. Since it is such a non event for me that was right for me but only you can make your choice. I would never try to influence you.

    Good luck anyway.


  • Thanks Bob.

  • I think you've analysed the issue with great insight but you are still back to the same question we all have - to AC or not to AC. For me the fear of stroke outweighed all other issues and so I fought my GP for AC.

    Making a decision is the most difficult bit (I was the same when offered ablation - will I /won't I, I did!!)

    So just wishing you good luck in your decision making 🍀

  • Yeah - that's the problem with ambivalence........keeps you stuck until something changes in favour one I can't make the decision ...yet.

  • Well here is my pennyworth. If I had runs of tachycardia that lasted 18hours (just into the fourth week of my current tachycardia), much as I hate taking ANY tablets, I think the fear of having a stroke would force me to take an anticoagulant. Yes, I too think I would rather die than be left severely disabled by a stroke.

    I take warfarin and like you it can affect my stomach. I got around this by taking my tablet mid breakfast, which stopped that problem.

    I would go onto one of the newer anticoagulants, but the hospital where I have a cardioversion when I need one has told me that they want me on warfarin before they will carry them out.

    I fought for years against taking Flecainide (or come to that any heart medication), however since starting to take Flecainide regularly last year it changed my life and I had my old energy back and felt completely 'normal'. However for me I think Flec only works for AF and at the moment I'm in Flutter.

    I think we must all weigh up the pro's and con's and then make our own decisions as to what we think will help us personally. Hope you can get some leads from everyones answers here which help you decide.

    Best wishes.


  • Thanks Jean, just helps to know others struggle as well.

  • At the same point as you I sat with my newly prescribed NOAC pondering whether or not to start on this road. A week later I was still staring at the packet. I thought well what has changed really other than one day I was 64 and the next 65 and now I am deemed to need anticoaglation.

    While having lunch my cousin called to see how I was and in the course of the conversation I told her about my fear of starting on the anticoagulant regime for fear of taking such a potent drug and fear of stroke v bleed etc.

    She is very forthright, plain speaking and capable. She explained the pros and cons and what she had seen as a trauma consultant over the years in a and e dealing with stroke victims and major bleeds sometimes caused by anti coags. Her words were clear in instructing me to look at the case of my undiagnosed af uncle who had a major stroke and his life post stroke. Within that moment my mind was made up, I opened the packet and took my first pill while she was still on the phone.

    Three years on so far so good and when I have my huge arrhythmia attacks and languish in hospital with vile symptoms at least I know I have done all I can as far as I can to protect myself from the stroke fate that overtook my uncle and has left his life devastated.

    I hate taking drugs and currently wondering whether to start on new prescribed arrhythmia and bp meds but my anticoaglation regine will continue as I fear stroke more than a bleed.

    Good luck making your decision.

  • If I still had AF episodes I wouldn't hesitate, the decision would be much easier, thanks for your input.

  • A very well put summary and dilemmas. Yes you certainly have added complications over the rest of us. Here are some additional thoughts over those in other responses:

    ..... Which of the NOACs did you actually try and what medications (and doses) were you on when you tried them and compare to now?

    ..... Did you try warfarin?

    ..... Try and find out what additional knowledge has been obtained re the NOACs since you last took them. This will involve not only you doing some research but also contacting manufacturers, teaching / research hospitals. Once a medicine has been in circulation for 3 or 4 years or more there is much more feedback about complications, negation of complications, etc, than there would be from the initial and final trials leading up to product approval.

    ..... Consider trying a number to see what happens re complications (but don't stop straight away unless told to). The reason that I say this is originally I was on Apixaban but had to change to Warfarin to have ablation. Initially I had real problems with Warfarin because INR was all over the place (separate genetic testing showed some intollerance to warfarin) but after 6 months became more stable even though that stability is no where near teh stability that most people have.

    ..... Unfortunately the number of people who have a debilitating stroke significantly exceeds the number who die from a stroke. Certainly, in my case, I would bet that Murphy's law would strike.

    ..... The risk is 2.2% and your maths is correct. However the risk does increase year by year.

    ..... You have probably have already done this assessment but I am writing it for others benefit. You and 44 other members of your AF family have gathered in a hall for New Years celebrations. However everyone knows that 1 of the party will not be at the next New Years' celebration because of a stroke. (Yes I know that is ignoring the other things that people in the group might die from, such as old age, other illnesses, etc, in the intervening year so actual number dying will be higher). That is repeated each year.

    ..... Personally I would try and see what happens taking anticoagulant(s). If you get too many effects from all the different ones then so be it but at least you will have tried. Even if my AF is "cured" after my next ablation I will stay on an anticoagulant for life even though I am 61 now.

    Good luck!!!!

  • PS - I did not include the examples of people I have known who had debilitating strokes and whom I have written about in a number of posts because I know you have read them.

  • Thanks Peter you make some interesting points which I will follow up, I was on Dabigatran which I know is now starting to have some interactions with some other drugs. But there are other options. I am seeing my neurologist in April and both my EP and neurologist have promised me they will consult and inform each other my best options overall.

    For me it is about finding that bit of information or gut reaction to a statement or question to swing the argument one way or t'other.

    Thanks for sharing and your reply, I know all you guys want to be supportive and that means a lot.

    Best wishes CD.

  • Hi I had to make a decision when diagnosed with breast cancer - whether to accept the offered chemo and Herceptin or not. I was in a grey area after the surgery and medics would not advise on the best course of action for me. The oncologist said "imagine how you might feel if you don't take this treatment and the cancer comes back, then imagine how you might feel if you do take treatment, with all the side effects you fear, and the cancer still comes back". I realized that it had to be the decision I could live with that I had to take i.e. gut feeling. Decided against, and oncologist said "that's fine". Have been fine for over 7 years. However, when I learned about my new AF last year and the risk of stroke, even at 1 on chadsvasc score I pestered for AC. Since starting Apixaban my AF has been slightly less frequent which I put down to less stress because of less fear. Soon I'll be 65 so a 2 on the scale, and very happy to feel safer even though I hate taking drugs... the fear was worse.

    Hope you are able to work out where your gut feeling really guides you, then to follow it. Good luck x

  • You are right - the fear is always worse - I know once I have decided I will get on with my life - thanks for the input.

  • When I was put on Warfarin after open heart surgery (and I had continuing AF) I was furious but assured that it was temporary. After a while, I persuaded GP to put me back on aspirin. As we know, this is not now approved. Cardiologist put me on an NOAC and said that I need AC permanently.

    Like you, I am anti taking any unnecessary meds and will always question everything. When I thought about it, I realised that I was really anti-Warfarin for several reasons, most of which have been aired here before. I wasn't really anti AC. I was pro-stroke prevention and even though my CHADSVASC score was zero, I had accepted aspirin which was approved at the time for stroke prevention.

    Don't do anything out of fear. Do whatever you do because it's the right thing for you.

  • I agree - do whatever you are more comfortable with. Doing something that feels wrong can undermine one's whole sense of well being.

    I think your dilemma is quite a challenge for your advisors.

  • Love the opening comments about the more informtion you have the more complicated and difficult it is to as assimilate the data and use it effectively...... That is exactly where I am.

    Thanks but I cannot take Magnesium, contra-indicated for Mg - the best I can and do do is bathe once a week in Sea Salt mineral bath.

  • Myasthenia gravis - muscle weakness which is greatly exacerbated by magnesium - as my breathing, swallowing and just opening my eyelids are often effected I am not going to ever take the chance! I was even criticized for taking salt bath once a week and certainly notice the difference in muscle tone so have to be very careful only to have them at night, never stay in for more than 10 mins and ensure I am on my Meds & CPAP machine immediately afterwards. But I don't get the dreadful cramping at night since I started to do that - Mg is a very peculiar neurological disease.

  • CD I like most others here also fear stroke, both my parents had major ones and died soon after. I also hate taking medications and know now I will be on these anticoagulants rest of my life. This is all part of accepting the reality of having afib which I am still trying to deal with. None of it is easy....seems like there is always some decision one has to make regarding ones health. I know I would be way more anxious without the medication so thankfully it is available. I understand how difficult it is though as grateful as I am that I can take something that will prevent stroke, at same time it reminds me that something has happened to my heart. Then I think, well at least I knew I was in afib rather than walking around with it and not knowing thinking all is well.

    Good luck with your will know.

  • To Kai & Billandben - thank you for posting the film - it was good to see these ideas expressed and shared by a British team. I have been following the work and practising the techniques of HeartMath for the past 5 years or so and it has helped my heart coherence enormously. I have some way to go but I know when I am in connection and when I am out of connection so thank you for the reminder - sometimes we get so caught up with everyday living we forget to take the time or don't have the energy to do some heart coherence. A timely reminder to go ask my heart, thank you

    If you are interested in these practices you may be interested in this film and the work of HearthMath - not as beautifully made as Of hearts & Minds but interesting in a different way - especially the bit about global coherence - this time of polarisation and conflict will pass and we will move to a time of coherence - there are many like minded souls working 'with heart' to help bring that time about.

  • Delighted you like it - look at the web-site - lots of resources and information.

  • The following comments are not really relevant to CDs actual post but worth mentioning I feel. With two exceptions all the replies are from females. Peter and I both apparently have no problem taking drugs so is this a lady thing that they don't like being told what to do and need to do their own due diligence first? Are we males more willing to be told?

    I have thought back over my own problems these last few years and can't see any time when I had a problem deciding. When offered ablation there was no doubt in my mind that I should take any opportunity to rid myself of AF and after the first, scary though it was the second two were easy.

    When they found I had prostate cancer my first thought was "cut it out". The doctors didn't really want to do this and explained that this would change my life and not for the better. Impotence and incontinence were just two of the side effects but my reasoning was if it isn't inside me it can't hurt me. Eventually they capitulated and operated which was absolutely right for me as they then found that it had already escaped. This meant that I had to endure 33 days of radiotherapy and three years of hormone implants. I never questioned this treatment. They told me it was my best chance of surviving so I accepted. What it did prove was that my gut reaction was right since had they not operated they would not have known the extent of it and the radiotherapy they originally wanted to do would have missed much of the target.

    Five years down the line blood tests show no sign of it. Does this mean that gut feelings are always right? Who knows.

    Are the two genders so different or is this a perfect example of lies , damned lies and statistics?

    Random thoughts I know but surely worth considering.

    Happy Mothers day to all.


  • This is a bold step to take Bob!

    My own hesitancy in taking an anticoagulant was based on the fact that if there's a 85% /15% split, I frequently find myself in the minority and sometimes (eg blood group) I'm in the less than 1% bracket. It makes one apprehensive about doing what is best for the majority and suspicious of statistics.

  • Interesting observation that women seem to have more difficulty deciding ........maybe that is why the replies are mainly from women - because they are more able to empathise with the dilemma? There is also a known biological reason why males tend to be much more decisive which has its roots in our ancient anthropological shared history, whilst women are more sensitive and aware of the needs of others around them. Together we thrive!

    I also rely on my 'gut' feeling and after some more reflection think this maybe a reason v body ambivalence.

    This is not a definitive exercise but I just did 20 mins of HeartMath's heart coherence exercise - I have a monitor which gives me direct bio-feedback of my heart's pulse and electrical activity in real time - I need to keep my heart's electrical activity around .2Hz to stay in coherence. The app tells me whether or not I am in coherence via the use of various graphics, interesting experiment.

    I had 5 mins of meditation establishing coherence - then thought about taking ACs - immediately went out of coherence. Changed thoughts to neutral - back into coherence after 30 secs. Then thought about not taking ACs - back into coherence and stayed there. I repeated this exercise 4 times - same result. i am going to do this for the next 5 days and record the findings - let you know how I get on.

  • You've opened a can of worms there Bob! The statisticians will probably note that the opinions of two men can't represent all. I am guessing that there more female active participants than male on this forum.

    If there are differences in males and females in this context, I think the significant one is that the females are more open to sharing their dilemmas. Men usually try to convince themselves that they make decisions on facts. Sometimes they imply that this is the only sensible course of action.

    None of this is really helpful to CD I think.

  • If we cannot laugh at ourselves...........LOL

  • You've got AF therefore your chances of having a stroke have significantly increased. In 2016 it is possible to take a daily tablet, without side effects and without any hassle whatsoever which will reduce that risk almost equally significantly. Unless you are in a small minority who can't take these NOACs - and are you really sure it's the NOACs that are giving you problems? - then it's a no-brainer.

    Your AF doesn't mean you will definitely have a stroke but you are certainly in the category labelled 'those most likely'. You can juggle CHADS stats as much as you like but any reassurance you get from a low (ish) score is largely illusory.

  • 1. I am not having AF episodes - although I used to.

    2. I am not currently taking NOACs - I took Dabigatron for a limited period of about 18 months and yes I KNOW they caused gastric problems and if you look back at my posts during early 2014 you will see I posted quite a lot about that and I came up with the solution - stop eating all carbs & stop taking all anti-acids when on Dabigatron - it worked.

    But I am now taking other very powerful meds which do effect the gastric system and are already causing me problems.

    3. I said in the beginning that I have been through the arguments about stroke risk - it is not helpful to me making a decision - for me this question is much more profound than will it lessen my risk of stroke.

    Thank you for your input.

  • Hi I have Rheumatoid Disease and am taking quite a lot of medication for Rheumatoid,the 12months ago developed Septicemia,which led to AF! From a medical background I have always looked into medication before agreeing to take it,but the one thing which is important to me is stomach protection medication!

    I read about people not being able to take vairious meds,I suggest you ask your GP`s for these,I take a drug called Pantoprozil,it has helped my stomach lining for 16yrs now!

  • Thanks, Probanthine was prescribed but I will never take another PPI stomach med as long as I live,

    I control symptoms with diet, meditation and exercise. If the pain gets very bad usually Gaviscon in liquid form relieves the cramps but I have to be very careful because it contains Magnesium.

    Starting every morning with a smoothie really helps as that is when the cramps are at their worst - today's was apple, melon, banana, 1/4 in of ginger & 1/4 of peeled lemon, physillium husks & milled walnuts with COQ enzyme - works a treat! Other things that help - sipping plain hot water.

  • Wow - you survived septicaemia - well done! Sorry it led you to AF. RA is awful, I do hope you are not too incapacitated by it? I have just had RA ruled out as I am very high risk for rheumatoid disease, both genetically and medical history.

    Best wishes CD

  • What decided the AC for me was being able to quickly reverse a bleed as I had bled before. Luckily I am able to take warfarin and monitor myself. Taking the tablets with food seems to lessen any after effects. Making decisions about whether to take a medicine always seems to be the hardest part. Good luck with whatever you decide.

    I'm struggling with night sweats at the moment, my GP has put me back on HRT after being of it for over a year but after taking it for a week it hasn't worked and has woken me early each morning. Should I ask for more tests ? I was 84 last weekend. Wishing you well. Terry

  • Thanks you Terjo - never went near HRT - despite traumatic menapause after hysterectomy. Why are you taking it? Keep well........

  • HRT saved my sanity at the menopause and it stopped the sweats which are caused by loss of estrogen, he thought that maybe it would help again this time. I have been fine on HRT for years but it was stopped when I was in hospital in 2014. I have a pacemaker and take digoxin and bisoprolol which were started when I was so ill that I didn't have much say in the matter, Suprisingly I've got used to them and tolerate them ok. Just worried at what the night sweats could be caused by as they started about a month ago. Be well Spring will soon be here ! Terry.

  • Hi CDreamer, don't know whether you have got the energy to read another reply but I agree entirely with you taking AC's is not a no-brainer and the stats on strokes are not clear.

    If I was you I would find a high quality Alternative Practitioner and discuss the way to improve those stroke stats even more without taking AC's.

    I haven't read all your replies but know my suggestion will be a minority view.

    Good Luck whatever you decide.

  • Thanks, I do work with complimentary therapists, what I would really like to do is work with a Functional Medicine Practitioner who is a qualified Doctor as well, very difficult to find one though so if you know of any, please let me know.

  • Haven't heard of a FMP but sounds ideal. I know of only one more integrated GP practice

  • Oh goodness, late to the party as always but what an interesting discussion and what a dilemma for you - as you say, powerful arguments either way and dire potential effects whatever you choose to do.

    I'm very interested in your decision to use 'coherence', I must look this up - it sounds like a way to tap into the subconscious mind using the heart as a symbol of it, though I don't claim to know much about that either, it's just a thought and probably wrong... I am on Acs (warfarin) myself, despite being just 58, because my cousin, who also has AF, had a series of TIAs at age 57 and so I know lightning can strike...

    I went to see my doctor for a review recently and he said, which I thought was good of him, 'In your shoes I'd be doing exactly the same'. However, I don't have your complications and I know if I wasn't having AF episodes at all I would quite likely feel differently.

    I know I would ask an EP, I would say to them, if it was your partner, what would you advise? Forget the professional opinion, what does your heart, your gut tell you? They might not be willing to do that, but I know I'd ask it just in hope, because they know so much more than we will ever do.

    Whatever you decide, once you've made the decision, don't regret it. You can never know where the other path you didn't take would have led you. Either way, you can only do what you believe is best. Good luck with the deciding!

  • Thanks, so good to hear from you, how are you doing?

    Wise words as always.

    Heart coherence is when your heart and mind (thoughts) are in sync - this shows up through a sensor on your ear lobe which connects to an app on smartphone or a separate device. It was developed by HeartMath who do some amazing work (privately funded org by the way) around the heart's intelligence and how the heart can connect to all other beings, the earth and the universe. See link above - it is all a bit too much to take in one go as their work is SO huge but on a purely practical level it is used in many schools in US and in UK to help children self soothe and cope with stress, anything from abuse to exam nerves.

    I have been using it as a bio-feedback - the fact that you can actually see not only your pulse rate but the electrical activity and how your thoughts directly affect your heart's electrical activity really helps focus so I use it for

    my own relaxation exercises and have done for about 6 years.

    For me the decision is about feeling comfortable in my body, not just using the reason and this may sound really weird, but then I am into the weird stuff, the only decisions in my life I have regretted are the ones I made when I ignored that inner knowing, some may call it the gut feeling but it is more than that, that happens of course, but this is much more subtle and sometimes it is more about learning from the process than making the actual decision. This feels like one of those times.

  • I'm doing okay, INR went down to 1.7 so I've got to go back this week (boo!) but as the nurse said, it's better to have lost two stone than to be in range. I'm hoping she's right of course! Anyway apart from the adjustments I will go look at the Heartmath website, thank you for the link. I do think that my heart drops back into rhythm when I stop stressing, so this could potentially help a lot.

    I think what you're doing is absolutely right for you, and that the process of coming to a decision is as important as making the decision itself. Just take care on your journey :)

  • If I had AF episodes again I would not hesitate to take the new AC s. Stroke risk is there v plainly. You can always stop taking them

  • I totally empathise with your dilemma re whether or not to take anti coagulants!

    I started taking Rivaroxiban on instruction from my EP in the lead up to my ablation last November. He told me I could stop taking it six weeks after the ablation if I had no frequent or long lasting AF or Flutter. And so I did stop taking it because I wasn't overly happy to be taking it- I ride horses and bikes and am therefore at a risk of falling. Also although I can't say for sure that I had side effects, I did have some weird joint and stomach pains whilst taking it- which I no longer have. Whilst I was taking it I saw two medical health professionals for different conditions, and they both independently expressed their concerns that the NOACs had not been around long enough to be really sure of their safety for long term use.

    I have had several runs of Atrial Tachycardia and one of these landed me back in hospital, as despite Bisoprolol double doses it took 12 hours to abate. The cardiologist there (tho not an EP) suggested that, as it was more or less immediate in it's effect, I could use Rivaroxiban as a 'pill in the pocket' and take it if I felt my heart playing up for any longer than 30 minutes or so! As far as I can tell I have not had any AF since my ablation (and I would always previously have had symptoms of which I was aware) and periods of AFlutter or Tachycardia (other than the one mentioned) have only been minutes rather than hours. So, for now at least, I am happier not taking daily anticoagulants as I am not sure there is a need, and I worry that it would do me more harm than good.

    Once I am 65 (I am female) I may reconsider and hope that by that time there will be much clearer evidence to aid my decision making process. That said I have still to have my 6 month post ablation check up with my EP, and I will discuss anticoagulation with him again then.

    So- I guess that I am fitting into the female dithering, dallying, thinking outside the box steriotype, but I will use the NOAC as a pill in the pocket if I feel the need, and hope I have made the right decision...for now.

  • Hi

    we had a talk from a stroke consultant at our support group last week- we were talking about the questions you pose and he rightly said that the Chads vasc and hasbled are

    accurate over large populations but not too helpful for individuals BUT he took the view that if one had a bleed it would be preferable to the effects of a clot- if it was a massive bleed one wouldn't survive but one could survive for a long time after a large clot but one might prefer not too!!

    These were his personal views and i tend to agree with them!

    About the NOACS, did you try this which don't have a gastric effect??Hope you get to the right conclusion for you!!

  • Thanks Rosy for those useful comments, head says makes sense, body screams NO, I don't want to take them!

    I would like more statistical studies though on how many people have strokes who are not on ACs and that have had AF successfully ablated and comparison with population who have never had AF or any other arrhythmias - good question for the EP - thanks!

  • I can ask our medical director if there are any such studies- however, just to be gloomy (!!) I think you would also need to know how many patients have had a successful ablation who then stop anti coagulation and then go back into AF at a future date. This would help you to assess your future risk too. We know from the forum that this happens a lot - so is it really worth the risk which we know exists?

    I suppose one can also consider one's general health and the likelihood of a stroke from non AF causes as this might help you to decide in your individual circumstances- we all forget that whilst AF causes the most severe strokes there are many other causes of clots/bleeds

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