Post ablation concerns part 2 - Atrial Fibrillati...

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Post ablation concerns part 2

Heartening profile image
20 Replies

Hi everyone - last weekend I posted that 10 days after my PFA I went back into AF. Sadly I am still there & now pretty terrified it has completely failed. The hospital did an ECG on Monday then called on Wednesday to say for me to restart the Amiodorone which was stopped after the ablation & they would put me on an urgent list for a 3rd cardioversion. The booking team phoned on Friday and said I couldn’t have a cardioversion until I had been back on the Amiodorone for 4 weeks. I have queried this & they said they would go back to the arrhythmia nurses to ask and call me back, but of course I didn’t hear back. Since last weekend I have invested in a Kardia which shows I am in AF and average heart rate is around 120-130 - all the time. I’m not sure how accurate that is of course. Will this all cause permanent damage -especially as it is likely to be left like this for some time? Apart from the very uncomfortable feeling of a thumping heart my main symptoms are really achy arms & legs. I’m not doing much & haven’t returned to work. Has anyone else experienced this and is there any hope?

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Heartening
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20 Replies
Rainfern profile image
Rainfern

That must be so disappointing and you’ve been left in limbo. I had a cardioversion 2 or 3 weeks after the ablation which seemed to settle things down while the scarring healed. I didn’t have to take amiodorone though - so much depends on who you see. If it was me I’d be booking a private appt with an EP and getting my questions answered if you don’t get joy with the arrhythmia team. Go for what you feel is right because best treatment happens around an equal dialogue between doctor and patient.

Cardioversion never kept me in NSR longer than a week even with amiodorone. So the logic of giving me a CV AFTER ablation seemed quite different- it just helped things along while the heart healed and I’ve been in NSR since. Good luck

Heartening profile image
Heartening in reply toRainfern

Thank you for sharing your experience too. I was expecting I might have a few episodes of AF but this is all the time & I’m very worried the longer it goes on the less successful the ablation will be. It will be 3 weeks on Thursday since ablation - will be calling the arrhythmia nurses again on Tuesday.

Rainfern profile image
Rainfern in reply toHeartening

You’ve had some good answers here! 3 weeks can seem a long time but I agree with Steve you can turn down the worry button. Every day I was in persistent AFib, for over a year, I was sure that my heart would be reshaped and no ablation could help me. But it was all ok. We’re more than scary statistics after all!

Heartening profile image
Heartening in reply toRainfern

Thank you - lots of hope then.

OzJames profile image
OzJames

i remember one time i was about to go to Bali and a week before went into AF i was put on Flecanide and metoprolol and told if not back in sinus don't worry as my HR was 75 and rhythm quite even and that ill be booked in for the week after i return for CV, his comment was that the Flecanide can help make CV more successful if on for a few weeks prior to CV. It worked as he said though i went back into AF about 11 months later

JoDogBlue profile image
JoDogBlue

I've had broadly the same experience as you but I'm a little further down the road..it's now seven weeks since my ablation and I was back in AF after two days. I'm very symptomatic with AF this time and I've been back on the dreaded amiodarone for three weeks so am feeling lousy.

I had a CV pre admission call on Friday offering me an appointment in another five weeks. I pleaded my case for a cancellation and think I was heard but that might or might not happen. In the meantime I've just sent my EP consultant an email explaining my situation and asking for a private consultation to discuss possible outcomes and a way forward.

You have my sympathies, it's horrible being in limbo and things take forever to get done. I've been told there's still a chance of going back into NSR without further intervention and it's still relatively early days for you. All you can do is try to stay positive and fight your corner if needed. Yours is just one voice but try to get heard if you need help.

Heartening profile image
Heartening in reply toJoDogBlue

Thank you - yes I have recently discovered my consultant also runs a private clinic & Im already considering asking for a private appointment to discuss the way forward. What I’m most concerned about is what further damage I will do to my heart by trying to carry on with my life when my heart rate is so high.

Singwell profile image
Singwell

That's rough. I'd be concerned at having this relatively high HR all the time. Does the medication you're on not help lower the rate as well as assist with rhythm? Wondering if a rate controller would be a helpful interim at this point. Perhaps ask about that. I know BBs are often used for ratw control, Diltiazem can also be helpful and recently I asked my EP about Digoxin should I need it in the future. He looked very happy and said although it's old fashioned compared with more modern pharma it has a very long and respectable track record. Maybe talk to your Arrythmia Nurse and ask them to negotiate with your EP so that you can manage better.

Heartening profile image
Heartening in reply toSingwell

Yes - I am going to leave a message for the nurses today in the hope they will get back to me tomorrow. I don’t think Amiodorone does anything for crate control just rhythm.

JoDogBlue profile image
JoDogBlue in reply toHeartening

My heart rate was also high for the first 3 or 4 weeks after ablation. Its now around 90 bpm still high for me, so your's might start to settle. See what they say, my arrhythmia nurses take three or four days to respond.

Ppiman profile image
Ppiman

It won't cause permanent damage. Please do stop worrying needlessly about that. A fast heart rate can cause, as it did with me, a slight temporary reduction in the valve efficiency and heart output but these will be back to normal after you are sorted - which you will be.

I was wondering why you haven't been prescribed a beta blocker to slow the rate down? A single dose of 5mg bisoprolol, to my amazement and relief, stopped fast and symptomatic AF that developed after my ablation for atrial flutter in 2019.

Steve

Heartening profile image
Heartening in reply toPpiman

Thank you Steve. In the early days of my diagnosis I was prescribed Bisoprolol and later Adizem but I really struggled to put one foot in front of the other when taking these & then in the end they took me off them and prescribed the Amiodorone. After my 2nd cardioversion in June last year I remained in NSR until 10 days after the ablation. Immediately after the ablation the Amiodorone was stopped although my consultant said it remains in your system for 100 days+. However it was restarted again as soon as sent into AF. You have reassured me that I will be sorted and thank you for that.

Ppiman profile image
Ppiman in reply toHeartening

Amiodarone was next for me in 2019 with atrial flutter but my ablation came in time. It still has a bad reputation but studies show that, in the low doses used these days, it is safe.

I wonder whether your reaction to the rate control drugs wasn’t, as mine seems to have been back then, partly anxiety related? I found that bisoprolol gave me a kind of chest ache and if I walked far at all I also somehow felt like I would have a heart attack or something if I pressed on. Once I had an MRI and found out my heart itself was sound enough, many of these symptoms evaporated. I am a born worrier so I shouldn’t have been surprised but I’ve written here before that I remain unable to untangle the physical from the psychological effects of heart troubles!

It a troubling life, for sure.

Steve

Heartening profile image
Heartening in reply toPpiman

It really is!

localad profile image
localad

I went back into AF a week after a 'successful' PV RF ablation. (after constant AF 120-130 for 2 years) They tried a CV after a month (internally via a catheter)...no joy.

Went on amiodarone for 3 months. AF all the time. They then did a flutter ablation. NSR since . Stopped all meds then and dropped anti coag last year. 3 and a 1/2 years now all good.

Heartening profile image
Heartening in reply tolocalad

Wow! This gives me real hope! Thank you for sharing.

Morzine profile image
Morzine

I think it won’t do damage as last time I saw my cardio before this ablation I said I’d be pleased to get the ablation done to stop the afib as it last s24 hours and she said well some patients I have it lasts a week or more and she didn’t seem concerned.

I’m day 13 after ablation and I’ve had a whole weekend afib or is it ectopics I really don’t know I’m tired out. I keep checking my heart my pulse is not that high but the hearts been jitterbugging .

It’s disconcerting isn’t it. Thing is you feel so alone and you feel the heart so you feel vulnerable. I say yo myself calm down it will be ok but you still worry don’t you.

I’m sorry I’m no help except to offer sympathy as I do know from my own feelings how you feel so vulnerable. Life is totally non hold isn’t it. I wake in night first thing I do is feel my pulse.

Sue

Heartening profile image
Heartening in reply toMorzine

That’s me too Sue. Constantly checking pulse even in the night. I too am trying to calm down but when you are worried about something this is almost impossible. Don’t think you are no help though as your reply means a lot and lets me know I’m not alone.

Morzine profile image
Morzine in reply toHeartening

You’re certainly not alone I’m sitting here now with it jumping. I keep trying yo convince myself that it’s early days and I must ignore it but it’s hard isn’t it. I could do with a glass of wine to calm down !!!! If only …. I try snd remember my last ablation early days five years back. I can’t remember the early weeks at all but I do remember seeing cardio after four weeks and telling him I’d had jittery heart but I think it was not much . He gave me the next strength flecainade. It’s all such a blur . I do remember asking in this forum at three months should I still get tired some days and thry all saud yes.

I’ve looked back at some old threads on this going back a few years and lots of people go thru this and it calms . Fingers crossed.

I don’t see my cardio here for another two weeks. I had my ablation in Lyon three hours drive away so I don’t want to ring them in case they say come in.

Sue

LaceyLady profile image
LaceyLady

I had Dronedarone in place of Amiodarone

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