AF Association
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Permanent AF

Hello can I please ask if I am in permanent AF would an Ablation work ???

88 Replies
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Difficult question but unlikely in one go I fear. How bad is your QOL? Any treatment is only about improving QOL after all and if yours is not too bad the risks may outweigh any possible benefit. And this from a fan of ablation.

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Hi Bob it’s bearable at the moment have had one failed cv on bisoprosol and apixaban it’s the always been tired getting me down ! I’m used to dashing all over the place ! My doctor leaving decision to me ???

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If the DCCV failed ablation is unlikely to work then.

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Hi thank you for getting back to me! What is next ? Do I have to live in permanent AF ??

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Hi

I am in permanent and have been for some years, fortunately I only experience tiredness

Good luck in whatever route you take

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Hi I wish i didn’t feel so tired would love my energy levels back !!!

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Edm I too feel exactly like you in permanent A/F also have H/F what meds are you on I am on apixiban..digoxin..frousamide..bisoporlol 5mg which I have switched to taking at night still o/o/breath least effort..surely we can expect some better Q/o/l...roll on the day when we don't have as many side effects with meds ...good health to you ..Zee

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Thank you zee agree with you totally !!! Take care Eileen

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AV Node ablation ??? you should research that ?

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Hi thank you I will have a look it’s sounds very scary this one ??

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I'd not heard that previously. It always seems on here that patients have ablations after cardioversions have failed to work.

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It is highly likely that the Bisoprolol is making you tired. Why not discuss trying to decrease it with your doctor? It is there to ensure that your heart rate is not above about 120 when in AF.

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Hi Polski I did think that I am on 5mg and heart rate of 80 hopefully he might reduce it a little he nice to have some energy !!!

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I didn't know that Bisoprolol was meant to keep your heart rate to 120 when in AFib. I take 2.5 mg twice a day (and yes, I am tired a lot and am usually active and move fast!) but I still go up to 180 with AFib episodes!!!

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This is what I was advised by my cardiologist, but obviously other doctors may have other perspectives.

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Hi - just saw your post. Even if a conventional (paddle) CV didn’t work, ask about doing an internal (catheter) cv as these have a much higher success rate. My first (paddle) cv failed but an internal cv 6 months later worked and kept me in NSR for a couple of years. It might also give a better prediction on whether ablation could be successful. The longer you wait the less likely ablation could be successful as afar as I understand

Lance

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Thank you lance !!!

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Hi is one told at the hospital which type of Af you have

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Hello Vonnie ! Yes permanent AF !!! Just trying to work out my next move !!! But fear I’m stuck with it !

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I just was told over phone by doctor at hospital I had AF Still waiting for appointment to go to clinic So don't know which I have

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I hope you get sorted out !! This time last year I was full of the joys and now I feel like my world has changed trying to not let it get me down !!

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I know what you mean I was OK on the morning by afternoon I had 3 spells every time I stood up Same on the Sunday My doctor sent me to acute medicine ward in my local hospital I feel my world is crumbling down

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It sure is awful !! Let’s hope we both get sorted out ! Please let me know how you get on !! Do you work ? I work 4 days a week in a office this seems to keep my mind off it !

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I do work but off sick with this at moment I work 12 hour shifts with dementia

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Hi they are long shifts !! I do 7.5 hours a day but am sat down but do walk to work every day !!! Take care Eileen

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Yep very long and stressful Keep in touch Be nice to know how we are both keeping

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I sure will !! It’s lovely and sunny out there today I’m off to have my coffee in the garden 😄

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Hope you enjoy your coffee I have been on decaffeinated for years now

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Only have de caff tea !! Do like a proper cup Of coffee and I am ok with it too along with a nice g and t 😄

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Have had mixed comments about alcohol I haven't drank since Christmas Do enjoy a drink though Helps you relax

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I still have a couple of glasses of wine at the weekend !!! And have been ok it must be hard for those who cannot drink as it triggers their AF ! I’ve not given anything up if it goes off I make a note of what I have eaten or drank ? The other day I had a rich tea biscuit and that started if ???

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If you are in Permanent AF how can you say that coffee/wine etc doesn't affect it? I would have thought that it could well be making it worse. Have you considered all possible life-style factors? I suggest you try reading drjohnday.com for more information on all things AF.

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Vonnie - there are 3 types of AF - paroxysmal AF - it comes and goes - you will usually but not always feel the difference. Many people are more symptomatic with PAF than those in permanent or persistent AF.

Persistent AF means you are in AF all of the time - but it may be possible to convert you - that is why a cardioversion is often offered before an ablation.

Being in permanent AF means all attempts of cardioversion have failed and you have to live with being in AF permanently.

Everyone is different but many people find it is easier to live with than when it comes and goes because your body gets used to it although some people may be offered treatment such as Pace and Ablate Which can improve your QOL.

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This my situation and have made peace with living with permanent a fib. In fact days go by without me focusing on it. I'm 74 and for me now it is just another chronic illness that's well-controlled.

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Hi - I have permanent AF - have been permanent for about 3 years. What meds are you on - these can make you tired and AF of course. I saw a EP privately last august and my only option other than meds is pace and ablate - which I am still considering. My meds are Nebivolol 5mg, Diltiazem 180mg and Rivaroxaban 5 mg for AF and Ramipril because I also have Heart Failure. Until recently I was on Bisoprolol but it was causing too much breathlessness so changed to Nebivolol - this does seem to be much better for me than Biso and I feel less tired.

Cassie

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I'm on ramipril for BP apixaban and busoprolol

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Hi Cassie thank you for getting back to me! I’m on 5mg bisoprosol and 5mg apixaban maybe I should ask my doctor to change the bisoprosol as I get breathless too !!!

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Hi again - I had problems getting this changed - the cardio department would not change it they offered something else which to me was not suitable. I have mild COPD and I had been told that Nebivolol was prescribed for people with asthma and lung problems, thats why I asked for the change. A few months ago I told my GP what hospital had said and she prescribed it for me - I thought she could not do this only cardio medics - so have been on it for nearly 3 months now and I feel happier on it.

Cassie

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Hi I see i wonder if he might lower my dose ? I don’t have any underlying illness I was going to say I was as fit as a flee 😄 until I got this Ab Fab thing !!

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Impossible for us to answer Edm174, but I read your history and I see the CV did work for 2 weeks which is not great, but it is better than not working at all. Countless people manage to lead relatively normal lives on medication and if Bisoprolol does cause unacceptable side effects, there are alternatives as others have said.

It might be worth seeing your EP again and asking him if he can give you a realistic opinion of the outcome, even if more than one ablation is required. Alternatively, it might be worth considering a second opinion. I don't know, but I wonder if a private consultation might be more helpful, at least you will have more time to discuss your options.

If it helps, over the last 3 years, I have met several people in permanent AF at our support group meetings and they really are getting on with their lives and have no interest in having an ablation. I wish you well.......

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Thank you for your comments !!! Just would like the best out come I do try and get on with things just still all new to me! !!

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My brother had permanent afib and had the ablation. He is afib free for 10 months now. His EP said 50% chance of success for 5 years.

He is 72 yrs old and stated he would do it again.

I have Paroxysmal afib and been afib free almost 8 months after my ablation in July.

No guarantees but his QOL was greatly improved.

Best Wishes.

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Thank you for your comments so pleased it worked for you both !!! I will be having a discussion with my doctor to help me decide I am 60 and would love to be Af free !! Nice evening Eileen

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I also have the supposed permanent afib ..........sometimes seems better as I notice when afib is intermittent it is seems really hard on people and causes worry and fear.........having it all the time I don't really notice it much unless I drink wine!!!!!

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Thank you for your reply I appreciate your comments

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Spiriting What happens when you drink wine? I ask because I recently drank to much and now I get breathless when doing the most every day things. I wonder if this is down to drinking and does it go away with time, ordoes it happen sometimes when you have been on beta blockers and diliazem for some time and is it worth changing meds.

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i don't drink too often as some wines , I notice, can make the heart more active which i notice at night....HOWEVER seems if i drink Prosecco or something bubbly it is ok...I also try and put ice in. I take Diltiazen and a blood thinner. Once the heart gets activated it does seem to take a while for it to calm again........That is as far as i have gotten on my research in this area.......hope things have calmed down for you by now. Also maybe need to drink more water

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If your fitst CV worked, if only for 2 weeks, can't you request another? You may be put on a course of Amiodarone first but if the CV works then it's worth it. Apparently 5% fail to convert, 25% fail in first 4 weeks, 50% fail by end of year one! As in life all down to numbers. Good luck.

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Hi Bennie yes they did say they would do another one with stronger drugs but if it fails again will I be stuck with these stronger drugs???

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Sorry don't know. I try and avoid ifs buts and ands, too much information. I tend to deal with problems when they present themselves, my choice. Let us know how it goes and place your trust in the professionals. Good luck and happy Sunday!

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Happy sunny Sunday 😄

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Hi I was in permanent Af for several years on meds, QOL was decreasing. I’ve recently had a pace and av node ablate procedure and am definitely improved although still getting ectopics. I’m much less breathless and have more energy. I have odd days when I’m rubbish but in general better. Every case is different though it seems, good luck.

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Given the above information - I would suggest that you are in persistent AF - not permanent so therefore as Flapjack described there is a possibility that ablation may work - but you may need more than one and the chance of success would be lower.

I really think it is a hard choice and maybe you need to ask your EP for his estimation of improvement or success in your case.

Best wishes

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Thank you for your reply !!! Am going to speak with my doctor for his advise my family think I should take any course of action to cure it !!!!

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Unfortunately there are no certaintities and it is wise to way up the risks as well as the possible benefits. I’ve had 2 ablations, both with complications and although I don’t regret doing them as it did give me 3 year without AF, it came back. The first made things a whole lot worse and the second exacerbated an unknown, underlying condition.

I think your family need a lot more information about AF and to realise there is no such thing as a cure - it’s about managing a lifelong condition - whether or not you are experiencing AF.

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Thank you I do try to tell them about it !! But they seem to think every procedure just cures it ??? If only it was that simple ! Have a nice day we gave lovely sunshine in Yorkshire today !

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Not so good here and I can’t move today so douvet day for me. Have a good day.

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What have you got to lose by trying the ablation ? And change to nebivolol in the meantime.

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Thanks mike off to see my own doctor maybe he can point me in the right direction!!!

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Best thing. But don't be afraid to get a second opinion. I'm not convinced there is am actual mechanism that distinguishes permanent from normal AF, just that it never goes away. Different EPs may determine you have permanent AF or not.

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I was in persistent AF, I had my first ablation in June last year and was AF free until December when I went into Atrial flutter, I had my 2nd ablation on Tuesday and I'm back in rhythm and hopeful that it will keep the beast at bay! I previously had 3 unsuccessful cardioversions and honestly feel I had nothing to lose. Even though I went back into flutter I still felt better than when I was first diagnosed and don't regret the ablations at all! Everyone is different and I wish you luck with whatever you decide 😊

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Thank you Diane !!

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I have had permanent AF from July last year, DC cardioversion in December worked for 3 weeks. Am told standard ablation unlikely to work but that a 2 stage hybrid procedure has a good chance of working, am half way through waiting period for 1st stage, thoroscopic radio frequency burn around pulmonary veins on back of heart, 2 months to fully recover than more standard catheter ablation to 'complete'. Will report back later.

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Thank you Trevor will await your reports !!! Above sounds complicated will read up about your procedure!! Good luck!

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Wow amazing !!! Sounds very promising medical science is just brilliant!! Look forward to your journey !!

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People with permanent afib are ablated all the time but it may take more than one attempt. You should have a frank talk with your EP what to expect in terms of success rates. Some centers have better results than others, so you may want to shop around and then weigh ablation against other options.

Jim

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By hook or by crook you will have to come up with a more relaxed lifestyle which has less 'dashing about ' and '12 hour shifts' . One of my sons also works 12 hour shifts and follows a completely unhealthy nutrition pattern as a result. Many contributors to this site seem to subscribe to the theory that afib is the canary in the coalmine and that lifestyle can play a major part in how much it affects you

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For me, I worked 12 hour shifts as a nurse before I retired. I was younger, thinner, and in good health but they still took their toll. Sometimes I would have to spend my day off recuperating to go back and do it again the next day. And you know, when they assign you 3 12 hour days in a row, it's a killer!! I don't think I could do it with a fib. Our meds, eating, and sleep get too out of whack and probably wears out our adrenals.

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Hi I had permanent af for nearly 4 years went down the road of hybrid ablation worked for me so far thou has only been 6 weeks since the 2nd am 49

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Who has seemed you to be in permanent AF? Was he/she an EP? How long you been in AF? Have you any known heart problems? Have you had any heart scans to see if there any other underlying issues.are you fast AF or slow? What drugs are you on?

I am not medically trained but i think you need to see an EP to see what your chances are. It will depend on a lot of things after a full assessment.

I am now 58, had this since July 2015. It started PAF not so I intrusive and got more frequent and more intrusive. I had an ablation for AF in january and another for flutter in February. I am now off drugs entirely for weeks. Cured?? I am off drugs and am not in af !??

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Hi it was the cardiology dept that told me after check up from my first cv ! Take bisoprosol 5mg and apixaban no other health concerns no High blood pressure I found out I had AF after I had been walking and felt ill afterwards ! Never smoked don’t eat meat and walk most places was such a shock !!!

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Don't forget that AF can mean either Atrial Fibrillation or Atrial Flutter. The two have a different method of treatment when it comes to ablation, so I'm told. One can be easier to work on than the other, but neither have any 100% guarantee fix with ablation. The risks for me as things stand currently outweigh the problems I experience, so I'm not risking it and will stay on the tablets. Tiredness is the only issue for me, as well as the stroke risk of course.

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I had permanent AF and a flutter and a failed cardioversion about two years ago. I was very lucky and was offered a trial ablation which was then followed up by another procedure to check that everything was ok with my heart, at Liverpool Heart and Chest Hospital, So far (touch wood), I have been free of AF. I have even had a go at taking part in a Triathlon which is not anything i've ever wanted to do before!! I feel much fitter than before the having AF as I have been careful to protect my health. I am a 59 year old lady.

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Get the ablation. Sometimes meds that failed will work after one or two ablations. You may also want to ask about a hybrid ablation. It feels better to in in rhythm.

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Hi Edm174

I would not assume anything.

The advice I got was varied:

A) The sooner you have an ablation the better

AF is progressive - well it certainly was with me

And

B) pretty much the same as you have been receiving on line

And

C) the probality of success increases with the number of ablations etc - a detailed and constructive conversation with a specialist who really knew his stuff. Yes it was my decision but he helped me parameterise it.

Over a 2 year plus period starting with not knowing I had AF and doing loads of ski touring to a situation where I felt tired and breathless and yucky on a daily basis and hardly able to walk upstairs without panting I decided to have an ablation. That was six weeks ago and after a few weeks I was feeling great. Yes I know it is early days. But the difference between pre-ablation and now is huge.

Btw I had two cardioversions - one without amiodarone and one with. Neither worked.

I would discuss this with specialists. Also worth getting a second opinion. I really understand the dilemma. A good friend who is my age took the decision not to have an ablation and to change his lifestyle to improve the quality of his life. He is happy with his decision. Our goals were different and our experiences of AF were different.

So while it is ‘your decision’, the quality of specialist insights and input can make a significant difference in helping you make the decision that is best for you.

Lastly, while there are stats about success rates I have found that they can vary a lot. There are more than a few variables which impact the results.

Good luck.

PS:

There is so much more to say on this topic but my advice is that you should speak to specialists who know and understand the details of your situation, your goals etc and focus on parameterising your decision. Also, do not make any assumptions.

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Thank you for your reply ! I am going to see my own doctor and between us we can make a decision on my next move !

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In 2016 I was in permanent a fib with a diagnosis of Tachy-Brady syndrome. I had difficulty getting my heart rate regulated with meds and had more med side effects that was very stressful. So my EP recommended a pacemaker and AV node ablation for me. It has worked out well and now am stable and take no meds. It is a personal decision but I have had so many side effects from various meds throughout my adult life that I will do whatever it takes to get off of them. My EP said some people just don't seem to handle any meds very well where others can take almost anything without side effects. Like Bob says it depends on what your definition of QOL is for you. The less meds I take the happier I am. But I might be the minority.

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I have permanent AF and had a pulmonary vein ablation done in August last year, I had previously had 5 cardioversions and many different drugs including amerodion. After the ablation the specialist told me I had a lot of scaring on my heart, probably caused from some virus that I had had at some time, so he wasn’t overly optimistic. The AF returned in the September and I ended up with a pacemaker and had an AV node ablation last Friday. As present I’m feeling much better and have been able to stop meds other that apixiban. I have been taking it easy so far but can feel a big difference, no palpitations or throbbing neck. So far so good. Good luck if you have the ablation, I felt that I had no quality of life before and having this was a gamble but I’m glad I did it as there wasn’t anything else for me to try.

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Very happy you are doing so well. Take care JW. xx irina

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Thank you irina, trying not to get too excited, so far so good😀

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Happy you are doing so well. xx

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Hi, I was getting AF and was told an icd device would control it, it didn’t, then in December I had what was referred to as vt storm where the heart was beating at 150 bpm, it was like that for 7days, and I was cardioverted at 8 or 9 times during the week and eventually rushed up to Bristol heart institute on Saturday at 11pm in the evening and had ablation on Sunday,

It was the best thing to happen to me, if you need an ablation take it! It will change your life.

FBF

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Thank you glad you feeling better !!! I am seriously thinking about it !!

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I had a failed ablation for flutter 3 months ago. My lightbulb moment was realising that AF/AFL are no bar to improving cardio fitness. Back in the gym and feeling energised again.

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Great news oyster !! I try and do 10 thousand steps a day makes me feel better just struggle when it’s really hot !!!

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I have also noticed that with improved cardio fitness has come greater tolerance of the dreaded bisoprolol. After 5 months relative inactivity with persistent atrial flutter, I realise now, that I must have lost a lot of my previously good conditioning. Perhaps this is why Biso 7.5 mgs was intolerable then but less so now. Keeping my BMI low normal and 30 minutes fast walking most days has made me realise that there is life after persistent or permanent AF/AFL.

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Hi oyster I think walking is good exercise we can walk at out own pace !! And it does help along with fresh air!!

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