Week one post atrial flutter ablation. Not good but on the mend slowly.

[Ppiman]

It’s now five days since my ablation under general anaesthesia for what was called symptomatic permanent atrial flutter. The operation lasted around three hours. I’ve had the condition for a couple of months and was pretty much devastated by it. It changed me from being an energetic 65-year-old to being a very diminished individual, both physically and psychologically.

The ablation has worked and my heart is beating normally again. I thought I would write about my experiences in the hope it might help others since what I'd read from some others on social media led me to expect to feel much better this week than I am doing. For example, here is a quotation from someone on Facebook: "Successful ABLATION yesterday!!! I'm in NSR and everything is going well..." I feel GREAT." I wish I could write such a post!

More confusingly for me, my consultant and GP have told me that what I’m experiencing is perfectly normal – so why the discrepancy between what people suffer? Well, I can’t account for it at present except to repeat the adage that we’re all different. Maybe the reason is that only 10% of arrhythmias are “flutter”, and permanent flutter is much less still? Maybe it’s the side effect on my now "normal" heart of my bisoprolol 2.5mg (my heart rate has plummeted down to under 50bpm at times)? Maybe my heart needs to strengthen after being weakened by the flutter? Whatever the cause, this week has been an unpleasant experience when, at times, I’ve felt very poorly indeed.

The first three days brought lots of aches and pains many of which were around my heart and caused me, on occasion, intense anxiety. It’s hard to separate the physical from the psychological, and we all vary in that respect, I realise, but I have at times felt very poorly indeed - and frightened. I had swallowing issues, wherein if I gulped liquid, it created a dreadful kind of powerful palpitation feeling; I often felt something like a balloon under my left rib pressing on my heart – a kind of chest pressure and mild pain on the left side and sternum; I sometimes felt like something was stuck in my throat – and lots else besides. Weeing the first night was ridiculous – I was bursting to go but hardly could. I had to go back to bed still bursting to go and was forced to get up every half hour at times. I suffer insomnia but that night slept hardly at all.

Luckily… things started to improve a great deal yesterday and today is somewhat better still. I still have next to no energy and can’t do much at all without feeling unpleasant pressures in the chest and so on. So, I don’t do much at all.

I did find a truly useful and enlightening website that has helped me and my family through the week. It’s written by an American EP cardiologist who tells it “as it is” and who has also, I believe, has had ablations himself. This is the link:

drjohnm.org/2014/12/ten-thi...

Finally - a thank you to the fellow sufferers on this website who write in and help others. It's been an emotional experience all round and you have helped a great deal.

Steve

[jedimasterlincoln]

Thanks for the write up Steve, your experience will do as others have for you and help out!

I'd be a bit wary of the HR dropping below 50 regularly, that may suggest your dose of bisoprolol is too high and could account for you being so washed out. But again we're not medically trained - as a patient I'd query it.

Regards flutter- having had both this and AF over the last 5 years I can say the flutter certainly made me feel worse, but once that was fixed the bouts of AF I had seemed more intense! So it's a hard one to call.

[Ppiman in reply to jedimasterlincoln]

Life can be very much harder than many posts on social media suggest, I find. The worst aspect of arrhythmia for me is the deep fear that it is a signpost to something much worse. It's hard to separate the anxiety from the physical symptoms - well, maybe others are better at that than I am.

My experience is that time is the key - to be able to tell yourself, "I've had this before, it will go away". However, my first flutter attack mimicked a severe issue with my hiatus hernia, and even had my GP fooled. I pressed on quite happily for another month before my second flutter event, which took me to a proper diagnosis and treatment. It's been a nasty journey but one that I hope will soon arrive at a pleasant destination. I need a holiday!

[Ppiman in reply to jedimasterlincoln]

I forgot to add - thanks for the advice regarding the bisoprolol. I was on 10mg, then down to 7.5 with added digoxin (125mcg) but two days before the ablation I was told to stop those, keeping only rivoroxaban. The cardiologist then told me to take 2.5mg bisoprolol for a week after the ablation - so the dose isn't high (although its now acting on a 'normal' heart rate rather than flutter). I wonder if it isn't causing the low heart beat but this varies. I can tell when it is very low as it brings a kind of chest pressure with it. I saw my GP yesterday and he was entirely okay with my heart and my symptoms. I hope it's just a part of the recovery process. The flutter was permanent and I suspect took its toll.

[BobD Volunteer]

Why not read our fact sheet on "Recovering from Ablation" which was written by patients for patients without pulling punches or down playing recovery like so many doctors seem to. We were heartily sick and tired of people being told "you will be fine in a couple of days!" You can find this on our website (AF Association) under patient resources - fact sheets.

[Ppiman in reply to BobD]

I had read it, Bob, and it was very helpful. I forgot to mention it in my post. I recall it took me some finding on the website. Sadly, it had only a line about chest discomfort, pain, pressure and the like and, I felt, implied that these were unusual and need to be reported to a doctor. Sadly for me, I had a whole range of such symptoms over the first three days and yet my specialist and GP assured me not to worry about them at all and that all was perfectly normal so, in that sense, as excellent in other ways as it is, it didn't help me as much as I had hoped.

Steve

[jeanjeannie50]

Hi Steve, I'm pleased to hear that you've started to feel better and hope you continue in that mode from now on.

Thanks for the link to Dr John's after ablation advice. It's good to read of a doctor explaining what's it's really like after having one and what may be experienced during the recovery period.

Jean

[Ppiman in reply to jeanjeannie50]

For me and my family, that web site was so important and explained just what I have been going through. I'm so glad that I found it.

You've been through more than one ablation yourself, though, Jean making you, in my estimation, something of a hero. I wouldn't want another, but.. of course I would if need be since the effects of the flutter weren't something I would want to live with.

Steve

[Boyatthood]

Ppiman, I am 7 weeks post ablation for flutter. I am twenty years younger than you and reasonably fit but I can empathise with you feeling so rough! Its knocked me for six. The aches in your chest and that bubble feeling is very similar to my experience. Seven weeks on I am feeling much stronger and happier though so stay positive. I have had lots of ups and downs along the way though and my anxiety is that I develop afib instead of flutter. I have had episodes where my heart feels very flip-flop, dreadful tiredness, heart burn and hot flushes but after an ECG check at the hospital and my own home monitoring my heart seems to be still in normal rhythm. I am learning to be patient and strangely trying to see the best things in my life even when I do feel ill. Keep trying to be positive!

[Ppiman in reply to Boyatthood]

Thanks for writing. I have also had the pounding in the chest and worried about the cause, and I do hope atrial fibrillation doesn't come either of our ways. I suspect my being 65 wasn't relevant really as I was quite fit beforehand. In fact the day I ended up in hospital, I was charging around Oxford with my son and had felt perfectly well until half way up some stairs, the flutter hit me and I had to sit down and ended up in hospital. Even then, I put it down to my stomach issues (a hiatus hernia) - actually even now I slightly wonder if that might be adding to my woes.

Let's hope we both sail through whatever comes next and end up as right as rain. I think we will.

Steve

[Morzine]

Hi ppiman, my cardio put my bisporlol up to 2.5 after ablation to give the heart a rest and help it heal...pulse was mid 50’s .....but ..gosh I felt tired. Cardio reduced it at three months to 1.25 and I felt energy levels change .pulse now 67/9.... energy took ages for me, I reckon this last few weeks which is my five months post ablation I’ve felt at last normal.

In my early couple of weeks I had a couple of awful pains wafting from my chest right up into my neck I thought it was a heart attack, but it came and went in seconds.....I’ve put it down to wind, or osophegus.....it’s hugely early for you....hope you have feet up and doing nothing....

Sue

[Ppiman in reply to Morzine]

Thanks for that advice and information, Sue. Those pains must have made you quake. I had lots of chest pressure last night and wasn’t happy at all but kept telling myself it was “okay”.

Fortunately, I was able to speak to the specialist today and he told me to stop the bisoprolol as that was the cause of many of my symptoms.

I phoned him as I had had really low heart beat this morning - down to 40 bpm. I had been feeling weird and couldn’t stand without feeling my head was swimming - once, I all-but fainted.

I did manage to walk round the supermarket with my wife late morning, but, goodness me, it wasn’t easy at all. The bisoprolol also makes me feel much worse just before meal times. I get massively hungry and “burnt” and just have to sit down and eat something.

I’m hoping that from tomorrow I might start to feel a bit more like my old self. Phew, what a week.

[Morzine in reply to Ppiman]

funny you should say that I have sajd to my husband lots of times since my ablation ( and my upped bisoprolol) I get so ravenouse when I’m cooking dinner....I’m even eating chocolate which I don’t do normally.....Gosh 40 no wonder you felt odd.......

Try not to get to eager to do stuff.......all I can say from me is we started doing our usual circular walk round morzine , thst was after a month or so....but I learnt that if I started off with leaded boot legs not to force myself to do it.....cos I did once and fekt awful for a couple if days.....think it’s a recovery that varies daily so on days you feel you’re in third gear don’t try and be in sixth cos your energy will just go double zapped. Take it dead slow this week and next....I’m five months......on holiday in Provence and just wandered around town not even thinking about my heart......that’s the good bit......but it’s still in my brain lurking if I get a twinge I think yikes!! Guess after the shock of this it never leaves your head totally.....

Sue

Sue

[Ppiman in reply to Morzine]

Good to read, Sue. I managed a trip to Tesco late morning with Wendy, my wife (goodness how she must have suffered alongside me these few weeks!), but it was an unpleasant trudge and as lunchtime came, I was feeling really empty and even more fragile.

You mentioned Provence - lucky you! I found this quotation from Peter Mayle’s book:

“The people of Provence greeted spring with uncharacteristic briskness, as if nature had given everyone an injection of sap.”

I’ve never been there, so I’ll never know - but I could do with an injection of sap! 😉

(Actually, no, I’ve had my fill of injections!). 😳

[Morzine in reply to Ppiman]

Sap yes we all could do with those injections! Hey youreday five you should have your feet up don’t go out .....

Two weeks rest!

Sue

[Rbyy]

Hello. I am 63 and had my ablation in Jan of 2019. My only advice is to give it time. Like you I was told I would be back to my running and regular exercise in five days. But the reality was I had similar symptoms as you. Chest tightness and palps and fatigue. For me the chest tightness continued and is still there as of june 2019 but it has gotten better and better. What was a six to seven level pain is now a one or two only late in the day. I am back to exercise as well. I was checked out in detail with multiple tests on my heart so if you think its very bad you can ask your cardiologist to do testing. But if they think its just part of the recovery I would say give it more time. If after six weeks you see no improvement you could gave them to a scan and or ultrasound test to see. I think they set expectations way to high for this procedure. Your heart and body have been thru some trauma which requires recovery time. If you can try not to stress and if your afib seems better that is a good sign. It may take six months like me to get back to normal so know you will recover. Frustrating but if the afib is resolved its worth it. Best of luck

[Ppiman in reply to Rbyy]

Thanks for writing. It’s good to learn of your experiences, especially as I’ve had rather a bad morning. I have managed to speak to my doctor though. I was lucky and surprised to be able to to be honest and was beginning to feel at a loss. My heart rate had dropped to 40bpm and my head was swimming really badly if I stood up. He told me to stop the bisoprolol as he’s convinced that’s the cause of my ills and I’ll not need it now.

I had permanent flutter rather than fibrillation - I’m hoping last Sunday’s op sorts it. My doctor thinks the weeks of permanent flutter weakened my heart a bit and that will take a while to recover. It also seems to have brought on something called left-branch bundle block - another heart conduction problem - but he didn’t think that would be an issue, putting everything down to the effects of the strong beta blocker.

[Rbyy in reply to Ppiman]

That makes sense. Between the trauma to your body and the meds who knows. I think many times the drugs create entirely new issues. Dont be afraid to bug your doctor with questions. Its the only way to get answers. Also my advice is dont google any symptoms. I did that for months and it made my stress worse. Expect symptoms for two ot three months. If it gets worse dont be afraid to call your doc or even go to the ER if u r really concerned. But just know this is a fairly major procedure no matter what the docs tell u. Good luck!!

[Ppiman in reply to Rbyy]

I wrote a reply that took ages but up into went into the ether! Fib - technology, eh?

Mainly it was to say thanks. I’m trying to avoid ER as my experience a month back was a night and day in a holding triage area with a group of mad people who hacked. chatted and swore all night long. I had no sleep for 36 hours.

[Rbyy in reply to Ppiman]

I hear you i had the same ER experience. Hang in there

[Ppiman in reply to Rbyy]

It was mayhem. One chap had had a mild heart attack and his wife or partner was with him. He was giving her hell and even jumped on the bed shouting for a taxi. Another woman was telling another patient that she couldn’t sleep so would rather chat. Another poor soul had emphysema and coughed herself silly. My wife and I were listening to all this waiting to see a consultant who came at 4.00am... Madness.

[Borderstories]

Really appreciate your post. I am just beginning understanding my new AF. How are you today?

[Ppiman in reply to Borderstories]

Hi there. This morning I've stopped taking the 2.5mg tablets of bisoprolol, so today will be my first day without a tablet affecting my heart rate. I am truly hoping things will begin to normalise over the day since my heart rate has, over the past couple of days, fallen to around 40-45 bpm. I have to take great care when standing, as you can imagine.

Other current symptoms are chest "feelings", the sensation that food is stuck in my throat and some palpitations. As others have rightly pointed out, these are early days.

I hope you are coping well. Is your fibrillation or flutter?

[Borderstories]

How are you doing since surgery? I’ve been wondering how you are...

[Ppiman]

Hi there. It’s kind of you to ask. It’s a slow haul, really. My cardiac output was lowered by the permanent flutter and so my heart needs to strengthen over the coming weeks and months. This seems to result in my feeling tired quite quickly and to sense pressure or a kind of mild shortness of breath at times.

I came off bisoprolol a week after my ablation but have had to go back on it as I had a really bad bout of what turned out to be fibrillation last Friday. I’d never had that before and it really got the better of me. I’m back to normal rhythm now but still get ectopics at times (I’ve always had them) and my cardiologist explained that these are known to be able to initiate a fibrillation episode. Since last Friday, though, all has been well.

I certainly feel better but not really fully well by a long way. My heart rate drops to about 48 at times thanks to the bisoprolol, I suppose. My blood pressure seems fine, though - on the low side at times.

[Borderstories]

Sorry to hear about the fibrillation episode, and that you are back on the Bisoprolol... I suspect you need more time.... it’s early days. I have fibrillation- sporadically and it’s exhausting so I do hope yours remains in check. Keep us updated with how you are getting on!

[Padayn01]

This is a brilliant link

[Ppiman]

I just had a follow up heart scan two months after my ablation for persistent flutter. I haven’t seen the cardiologist yet but the physiologist said my left ventricle and valve showed nice improvement and said “all good”. (They were badly weakened by the persistent atrial flutter apparently).

I’m still taking bisoprolol 1.25mg. I’ve had no more fibrillation but get plenty of ectopic beats. I still feel the need to take deep breaths for some reason and feel strangely fragile with chest and upper abdomen discomfort on some days but can exercise better now.

So - don’t necessarily expect instant recovery following an ablation is my advice! I’m keeping my fingers crossed for continuing recovery 🤞.

Steve

[Goosebumps]

Hello. I was looking through old posts and replies and I came across your post ablation update. I was wondering if you have an update, how has it all gone since the last update?

Paul

[Ppiman in reply to Goosebumps]

Hi Paul. It will be eight months soon since my ablation for atrial flutter and still all is well heart-wise. I do get ectopic beats reasonably regularly but always have had those so I don’t think that is related or a worry.

I had one bout of fibrillation a week after the ablation which was treated with beta blockers, which I’m not now taking. However, because of that one bout I’m having to take the anticoagulant rivoroxaban for life.

Because I had a kind of breathless feeling for several weeks after the ablation (longer than the doctor expected), I was lucky to be given a stress cardiac MRI scan. That showed that I had left bundle branch block (which I knew about already from an ECG and have been told isn’t a problem) but otherwise I had a physically healthy heart - not bad for a 66-year-old. That took an awful lot of stress from my mind, I can tell you. In fact, I’ve come to wonder just how much stress and anxiety contributed to the whole affair.

Overall, I still haven’t got the energy, resilience or endurance I feel I used to have but I’m putting that down to age.

I hope you’re well, too.

Steve

[Goosebumps in reply to Ppiman]

Steve. Many thanks for the update. I think it helps to be in NSR when they go looking for other things like an MRI scan so the ablation was probably a godsend for you. I'm not doing so well, persistent AFib, unsuccessful cardioversion and heading down the ablation path. You're right about the stress though, I'm going through a divorce as well so it's a nightmare. But, I'm upbeat, keeping cheerful as much as I can.

[Ppiman in reply to Goosebumps]

Bad luck having to deal with all that. If you can stay feeling upbeat when life is battering you, you’re doing okay.

What I’ve learned through a few crises is, well, life goes on...

Keep going!