First post from yet another fearful afibber (lone longstanding persistent) facing an ablation!

So much to say and so much to ask – not sure where to start! First though, thank you all for just being here. I have lurked since discovering you soon after my diagnosis 10 months ago and have learnt so much. It has been comforting (especially as I live alone and have no immediate supportive family etc.) and informative plus, yes, at times confusing and scary too.

Anyway a few questions which, despite reading everything in sight on here, I would still welcome your opinion on - sorry to be a nuisance.

A seemingly healthy, active, dance-loving, non-smoking 68 year old (who nevertheless had high cholesterol and blood pressure and an irregular pulse), I went to GP in May 2015 after being queasy for 2 -3 months. Eventually in October was told I had AF. By end January this year had been found to have lone, persistent AF and finally put on Apixaban. In March had a cardioversion which reverted, probably after a couple of days. In May was put on Bisoprolol 2.5 mg (why not earlier?) then referred by my cardiologist to an EP who In August increased the Bisoprolol to 3.75 then 5 mg and put me on the waiting list for a (robotic) catheter ablation, with the proviso that I must go on Amiodarone before and after and that 2 ablations are likely to be necessary.

The main dilemma has to be do I go for it? It seems like the only course of action open and I recall one of you saying if the NHS offers you an ablation don’t look a gift horse in the mouth. However, maybe for those with paroxysmal AF and the more obviously nightmarish symptoms of pounding chests and visits to A&E, and/or already on toxic drugs, plus for whom there is anyway a greater chance of success, the decision is more clear-cut. A little part of me says why tinker, I can still walk and do some dancing and…. I believe actually I WILL go ahead but answers to the following questions (particularly from other persistent AFibbers who have had ablations) will help. I have numbered them to make it easy for anyone to pick out perhaps just one to answer. Thanks in advance.

1.If I do nothing, will the key symptoms of my AF (e.g., tiredness, weary legs, a feeling of “closing down) just get progressively worse? And/or lead to Heart Failure?

2.I know there are no guarantees but if “successful” and in nsr (a) Can I expect a return to pre-AF energy levels and therefore my usual activities/exercise regime? (b) Particularly, will my heart start to pump blood efficiently to my legs to enable me to walk uphill/go trekking/dance? (c) Might my queasiness and overheating also disappear (no-one has taken any note of these which I perceive to be symptoms)?

3.People on this site refer to being back in AF x days after an ablation. If you have persistent largely asymptomatic AF and are resting as recommended in the post procedure period, how can you tell?

4.As well as the warnings re complications, damage etc., mention has been made of the heart jumping around and even “episodes” of AF in early stages post ablation. Does this mean a persistent Afibber may get the pounding type of episode experienced by paroxysmal Afibbers? I am concerned because I live alone and miles from an AandE.

5.I really did not want to go on the toxic drug, Amiodarone, but it seems to part of the deal. If I have 2 ablations, the minimum time on this drug would be 9 months I guess – do the worst side-effects come into play soon after commencing taking or only with long-term usage?

6.And finally…… what is a TOE?!

22 Replies

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  • Great questions! Only one small comment: if you live alone and in isolated place, you should have a medical or ER backup plan whether or not you have AF. Send me a message if you want some tips.

  • Thanks lorna-doone. Not that isolated I guess, a fair-sized village and nearby towns but quite a drive to the nearest A&E which have never really thought about before - will do so now!

  • Hello Prancer and welcome to the forum. It's such a kick in the teeth to be diagnosed with this condition - I was happily messing along at 69 and feeling immortal three years ago when I was diagnosed with PAF.

    You have posed some interesting questions and there are many of us with persistent AF who will be able to answer - I wanted to welcome you and say well done for getting to see an EP.

  • Hi Prancer and welcome. First TOE. This stands for trans oesophageal echo cardiogram. Basically they put an echo camera down your throat to look into your heart from behind to check for any possible clots.

    None of us like taking drugs but sometimes it is necessary for a short while. Amiodarone isn't nice I agree but does the job and if it is part of the deal then a few months in a lifetime to hopefully be free of AF is nothing.

    Regarding post procedural events this is all about the heart healing during the three to six months after an ablation. I had highly symptomatic paroxysmal AF so can't answer if someone who was permanent notices although I would have thought that NSR would be a revelation.

    Answering your first question last , AF is normally a progressive condition so can get worse. Untreated yes it can lead to other heart problems like cardiomyopathy or even heart failure but suitably treated .i e reducing the fast rate and minimising events can make this less likely. You should understand that ALL treatment of AF is about improving quality of life as there is no fool guarantee of cure at present although many EPs feel thnat ear;ly intervention by ablation stands the best chance of a successful outcome.

    I hope this helps answer some of your questions and please don't forget to visit AF Association main website and devour all the info there.

    Bob

  • Thanks Bob and Finvola too. I have read up so much but it is so nice to have personal responses from people in a similar boat.

  • Hi Prancer, indeed you ask some corkers and in your place I would be also questioning whether or not to continue as I am or 'go for it' as you put it.

    I think it such a personal decision, as Bob has outlined. The only thing I could add is that I think the view about AF seems to be changing, we now are realizing that AF can shorten your life as it can cause structural alterations long term so if there is a good chance that an ablation would work - ask your EP what sort of chances would they give it for your circumstances - then I think that in your shoes, I would go for it. But I am not you and we all need to make our own decisions.

    Treatments are not just quality of life but also life prolonging with a better quality of life.

    I think most people know instinctively whether or not something is right for them so in your shoes I would do an inner meditation and go with the answer I was given - hardly scientific or logical but when you are stuck in ambivalence - which sounds rather like you are - that is my way of deciding, the only times I have regretted my decisions are when I acted against my instinct.

    Best wishes and let us know what you decide to do. CD.

  • Thanks so much for your considered reply CDreamer. Not sure the answer is going to come to me though!

  • PS - I had 2 ablations - in Nov 2013 which made things worse for me, partly my own fault as I did far too much far too soon because I felt so fantastic, and the second 4 months later which completely stopped all arrhythmias.

    The procedure itself was far less intrusive than I had imagined and although I tried to pretend I didn't really need in the week building up to the date, I am very, very glad I went for it. I was heading for persistent AF at the time with 2-3 episodes clusters a week and I was very symptomatic.

  • Prancer , you have received some very helpful replies already . I would add to this that when I, extremely reluctantly and after a ( one off ) bout of heart failure decided to go for an ablation, it was mainly due to my well respected cardiologist advising me that I would not be prolonging my life by opting against an ablation.

    Each one of us is different but you are right to ask as many questions as you can before arriving at your decision . I hope you are able to do so.

    Best wishes

    Sandra

  • Hi Prancer ! Well you really spurred me to reply to your posting which tells us of your doubt & lack of knowledge about the condition that you have been diagnosed with.

    I was like you - active & sporty & even the dancing bit as well. I had a raised blood pressure for years having been discharged from the army at age 18yrs - P8 - unfit for military service.

    The AF hit me when on holiday in Gibraltar under `The Rock` & I thought I was never going to get back up to the top again. The local Consultant physician put me on all these drugs including Warfarin which was a `Killer - Diller` for me as I had a duodenal ulcer & I suffered three G.I. bleeds which required hospitalisation twice. The local physician scoffed at my request to see the consultant cardiologist & wagged his finger at me.- `You will be `cardioverted & you will be back in AF inside f 10 days` - he said & he was right but I requested if there was anything else that could be done & the consultant told me of a new technique called -`Ablation` & said that he would contact the4 consultant at St.Barts in London which he did & despite my advanced years I was accepted for a trial.

    It`s no big deal Prancer but is not always successful the first time round & it might take a `couple of goes` at it .

    It leaves you a bit bruised round the groin area - but it fades with time.

    The `mapping` is quite important as the consultant investigates where the `pseudo` (False) impulses are coming from & eliminates (Ablates) them .

    An overnight stay in Hospital & if your ECG tracing is OK - out & back home the next day.

    Easy - Peasy - Japaneze .

    Some of those drugs you mentioned are big `no - nos` for me. I am a qualified Cardiac Nurse & ex - Medical Rep & I know a bit about the heart & its abnormalities & most of the drugs used & their side effects. I have discontinued Bisoprolol as it caused me problems with my lower extremities - aching & pain . I`m sorry but Amiodorone is not for me. I am back in Normal Sinus Rhythm & now knocking on to 86yrs. old

    Thankyou Prof. Schilling . I didn`t always see eye to eye with you but you are No 1 for me.

    Wish you the best Prancer & hope you`re soon `Prancing` about on the dance floor again.

    Ol` Timer

  • I was diagnosed with persistent AF about 14 months ago. I`m now 4 weeks post ablation and have been AF free since the procedure. I was largely asymptomatic while in AF. The only thing it affected was my exercise capacity. I`m a runner and while I was able to continue, my level dropped dramatically.

    My answers obviously reflect my own experiences and understanding. Other people might well have different experiences.

    1. The prevailing thought is that it might well get worse. I don`t know about heart failure but my own performance level definitely dropped over the year I was in AF.

    2. Again, everyone is different but there are examples of people who have returned to high levels of athletic performance post ablation. Cyclist Robert Gesink for example. I`m returning to exercise slowly so I don`t know how what level I will be able to achieve but it seems logical that a heart in NSR will be more efficient than one in AF. Indeed I ran one 5K in NSR (post cardioversion) and it was so much easier than when in AF.

    3. Personally I have an Alivecor device on my iPhone but Simply checking for an even pulse would be a good indicator I would think.

    4. I`ve had no episodes of AF since the ablation so I can't really comment.

    I`m looking forward to returning to running. With the right approach I hope to return to and even exceed my previous levels. So far, my experience is that an ablation is a very good thing indeed.

  • After having paroxsymal AF for some years, taking Bisoprolol and Apixaban, I had an ablation at Coventry hospital 4 weeks ago.

    It was the best thing I ever did. No hassle, straightforward and painless. I had an overnight stay because I had procedure in the afternoon which lasted for almost 4 hours. I was nicely sedated and the hours afterwards whizzed by until I went home late mornjng.

    Since then I have had no ill effects, no wierd things, no AF and only a couple of short spells of ectopic beats. I'm still on my meds, but life is normal and no AF. I am doing everything I need to do after having two weeks of doing very little. I am also back to my church bell ringing, only very gently tho😊

    I believe that a positive attitude and a cheerful disposition is essential to dealing with Life. I consider myself lucky that things are working out well, but I keep my fingers crossed and live everyday as well as I can.

    if not answering all your questions, I hope this reply illustrates that AF can be dealt with quite well, maybe requires a little persistence, but an Ablation is a very good move forward, and one that I hope will work for you too. 😂

  • Going to keep it short for once. Ablation.

  • Thank you for all your lovely replies and encouragement - nice to get up and find them. Unfortunately I overslept (I def blame the AF) and missed meeting friends for a walk so will dash out and see if I can catch them up and then come back and study all your answers in detail. Expect I'll have more questions!!

  • Hi Prancer

    As a way of background I was diagnosed with persistent AF just over two years ago during an operation and from what I know now I had it before that. Had an ablation end of Mar 15 but back in persistent AF just under 72 hours later. Have moderate to severe leakage in tricuspid valve so 2nd ablation has bene delayed because of that. I have definitely deteriorated in the last 18 months. Now to answer some of your questions.

    As my Dad said you are at where you are at even though it's not where you thought you'd be so we have to learn to adapt and move forward!!! (Said to be reassuring not harsh).

    Not only should you have an accident plan but you should have all key papers in a folder near your front door so that paramedics can see it and take it to hospital in the unlikely event that you have a bad turn that warrants it. Also as you are on your own you should effectively call earlier rather than leaving it much later because if you suddenly deteriorated then calling 999 will be difficult. In many areas (like around where I live they send a paramedic car first and they are more knowledgeable that normal nurses).

    Good that your on Apixaban and Bisoprolol. You may not have been put on Bisoprolol earlier because HR didn't warrant it at that time. Even if you are in persistent AF you will get enhanced symptoms and feel worse on some days than others. For instance I woke up last night desperately wanting to go to the toilet (did almost nothing) and with a bad taste in my mouth so AF had obviously been playing up in my sleep!!! Just one example. Now answering your numbered points and I am using the same.

    1). In answer probably yes but timescale very difficult to tell. Some find it takes many years!! Typically if in persistent AF you can lose 30% or more (eg 50%) of your effective circulation. Not necessarily heart failure (the true medical definition is not what it seems).

    2). The $64,000 question. Probably but not guaranteed. If in persistent AF more often than not (2:1) two or more ablations are required. If you are not in AF your heart will certainly be pumping better. There are a number on here who have returned to arduous things like endurance cycling. Certainly for me queasiness and overheating are symptoms (ie results) that are caused by my AF. I was also told that they were. I can be just sitting down and it gets triggered!!!

    3). Well some have a Kardia (aka AliveCor), some have one of the specific BP Cuff monitors. In my case (and for others) I felt the hear thump back into AF both after my DCCV and after my ablation. Also I felt unwell, hot and clammy, heart rate went up. Absolutely no doubt even without feeling my pulse!!! At the time of my ablation I had a Kardia and it was 109 as opposed to very low 60s.

    4). What you get afterwards is very variable. You may get very minor or a bit more. My gut feeling (I am not medically qualified) is that it is unlikely to be as extreme as some with paroxysmal because many of the pathways will have been ablated.

    5). Quite normal to have Amiodarone for at LEAST 1 month before and three months afterwards to help the heart maintain NSR after the ablation. I was going to be but found out that Simvastatin had caused liver function to be four times maximum allowed so EP decided that best to go ahead with the ablation without it. Some EPs decide on longer.

    6). Bob answered that.

    7). NEW - Rest will be very important afterwards so plenty of preparation. Also consider staying in a hotel for a few days afterwards. Further suggestions nearer the time of your ablation. (Personally I would definitely go for it!!!).

    .

    Feel free to ask further questions either on here or in a PM.

  • Thanks so much PeterWh - hoped you would respond as I had noted you seemed to be in a similar situation to me.

    Will definitely come back on your responses - meanwhile you are the first person to say queasiness and overheating can be symptoms (my cardiologist said not aware of a connection) and maybe also, do I detect, having to get up to go to loo in early morning which never happened before all this?? Prancer

    (Not sure how one does a PM)

  • Same age, also persistent AF and active. I've had two ablations, no rhythm meds now, and thoroughly pleased with results. I'd take the minimal risk of ablation(s) and the resulting quality of life every time.

  • I'm 67 and had successful ablation foir paf 3 years ago. I can now take a walk, do some dancing and gardening and although no fitness guru I can do normal stuff for my age. So I say yes!

    Goodvbluck 🍀

  • I started with AF almost exactly a year ago, although it was misdiagnosed as asthma following a virus 🙄. I ended up in hospital for 2 weeks at the begining of December last year as my BP was sky high and my HR was 195bpm. I was put on Amiodorone Rivoroxaban bisoprolol and candestartan and successfully controverted at the end of January this year.

    5 months 3 weeks and 2 days later the AF returned, another CV in A+E lasted a month when I had another episode of AF on holiday, this time it cleared up on it's own after 31 hours, I felt the relief of NSR just as they were wheeling the defib trolley to my bed!

    Since then I have had 3 further short episodes of less than 8 hours that have sorted themselves out, the last one being Tuesday of this week.

    3 weeks ago I met with my EP that said I could go on the waiting list if I wanted, but faced with the statistics of stuff going wrong I said I would think about it.

    2 more episodes of AF and the thinking is over, I'm on the list and nervously waiting for my appointment.

    Because of a back problem I'm going to have to have GA, but at least I won't know anything about it.

  • I am scheduled for October 19 to have first ablation. I have had PAF for ten years and decided to go ahead with procedure because I really hate taking medication. Beyond worrying about the toxicity of the medicine , the anxiety of worrying about another attack has really ruined by life. I want to run away from this whole thing; very nervous. There is something in my gut that keeps saying, go for it , so hopefully I will have the guts to follow through. Good luck to you and all of us AFibbers. It's scarey to do something and scarey not to. Gracey

  • Best of luck to you Grace - let us know how it goes.

    What you have said mirrors exactly how I have been feeling this morning. (although I do not have the attacks as such).

    Having said that, It has been so nice to feel less alone after getting replies to this post. I will be studying all replies again and no doubt will have more questions!

  • We are all in this together. Please keep reaching out as I will be doing the same. Gracey

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