Best way forward

[Tricia239]

I would really appreciate your thoughts on my best way forward. I recently had a two week episode of AF with an average heart rate of 120. I have had lengthy episodes like this 2 or 3 times previously. When I came out of it I became increasingly breathless and by the third day I wasn't able to do anything and went to A&E; I had several tests and the conclusion was that due to the AF episode I had a build up of fluid on my heart on lungs. I saw my EP a couple of days later and he suggested 3 options, (a) that I increase my current medication, which is 120 mg Sotalol twice daily and which I find makes me lethargic, (b) change to Amiadarone, but he warned me of the numerous side effects and that some of them could be permanent even once off the drug or (c) Pace and Ablate. I have to confess that none of these options appears very tempting and so I would love to hear what others think. For the time being I am trying to lose weight, which I've put on over lockdown, also to do more walking - also something I've not been good at for a few months and stick with the Sotalol. In a way Pace and Ablate seems appealing because it would be lovely to not take horrible drugs but my understanding is that the top chambers of the heart may well be continuously in AF and it seems to me that can't be good and would surely make the heart deteriorate sooner rather than later, but then equally perhaps the drugs do that anyway. I have a pacemaker but I don't think that makes any difference - I had it because previously when coming out of AF the sinus node was very slow to restart and it was quite scary; I am windowed and live on my own. I just feel a bit despondent.

[Hidden]

I think you mean atrioventricular (AV) node ablation. Has your EP ruled out a DCCV and second left atrial ablation?

[Tricia239 in reply to Hidden]

Yes, I think you’re right. Nothing was said about a second ablation but that was, I think, ruled out after the first one failed following surgery. But thank you for suggesting it, I will keep it in mind and ask the question.

[Hidden in reply to Tricia239]

I remember a lot of very positive feedback here about pace and AV nodal ablation. It’s not inevitable or perhaps even likely, you would be aware of your atria fibrillating as I understand it. I don’t think AV node ablation results in AFib, which generally arises from a lesion in the left atrium.Pace and ablate is a final step in AFib management and age is a consideration. If increasing the Sotalol doesn’t get you back in AFib then I wonder if it might be worth asking your GP if the addition of digoxin and a diuretic might be helpful for your pulmonary congestion. May I ask what you are currently prescribed?

[Tricia239 in reply to Hidden]

I have meds for high blood pressure, apixaban and the Sotalol. A&E prescribed Furosemide but my EP said I didn’t need it.

[Tricia239 in reply to Tricia239]

Perhaps I should have added that I recovered from the breathlessness very quickly following my day in A&E.

[Jalia]

Hi Tricia, I had a not dissimilar experience with fluid on the lungs after a bout of AF about 13 years ago before I had my first ablation. I presented at A&E and was admitted for a few days and given furosemide and spironolactone.This experience prompted my first ablation.

I understand what you mean about the worry of heart deterioration when in AF with pace/ablation. You have quite a decision to make.

I have very recently made a decision to have a 4th ablation although pace/ablate could be an option in future. ( I'm 76)

[Tricia239 in reply to Jalia]

Hi Julia, thanks for replying and I hope the ablation goes well with a positive result. You’re just a spring chicken - I’m 78 but certainly not prepared to be written off for a long while yet!

[Hidden in reply to Tricia239]

Tricia, I would like to put a word in for those of us with permanent AFib. With good rate control, an excellent QOL is commonly achieved. Only this afternoon I did twenty minutes on my shiny new rowing machine. Yes my heart rate did go up, but more so because of the excitement of the rugby international which was only settled at the death. I’m 72 and very active. Yesterday I nearly fell off a ladder, while clearing the gutters.

[Tricia239 in reply to Hidden]

It's good to know you are able to cope so well. I have no idea how you control the rate - I feel absolutely wretched when I am in AF and it obviously does my heart no good. I find I can't watch rugby any more, it's all too tense!

[Hidden in reply to Tricia239]

In my case, it’s the beta blocker Nebivolol, 2.5 mgs twice daily, very cardio specific and well tolerated by many here who couldn’t cope with Bisoprolol. My AFib has always been vagal in type, and mixed and adrenergic types of AFib may require more aggressive rate control med dosesRemember half of AFibbers have permanent AFib, and maybe half of those are unaware of it and accept the symptoms as part of the natural ageing process

[cbsrbpm]

I am in exactly the same position as you although I do not have a pacemaker. I had a cardio version in December and was started on Dronedarone which is a companion of Amiodarone but not quite so toxic. I had a 3 week episode of AF/tachycardia 120 bpm at the beginning of February but reverted back after taking extra diltiazem for a few days. I too have had the discussion with my EP with regard to pace and ablate and that is my final option if dronedarone doesn’t work for me. I am very nervous about that. I cannot have any more ablations as the problem is too near the AV node. It’s that or to live with permanent AF with rate control. I wish you well with your decision.

[Tricia239 in reply to cbsrbpm]

Hi, It's a tricky one isn't it. I wonder why my EP didn't suggest Dronedarone? I will have to ask some more questions I think. The pace and ablate is tempting because it would be drug free - I presume anyway, apart from anticoagulants. But I can't get my head around the fact that AF is likely to be permanent and just allowed to do it's own thing. So more questions I guess. I would be interested to hear how you get on, so please keep in touch. And, I too wish you well. Best wishes, Tricia

[cuore]

Propafenone is another drug you might want to ask your EP about instead of taking Amiodarone. I have taken Amiodarone, and for me, it caused more problems than it solved. I have been taking Propafenone for 1 3/4 years now (although I am now weaning off of it). For me, it has been doing a better job than Amiodarone.

[Tricia239 in reply to cuore]

Thank you, that’s really worth knowing and I will look into it. It helps to know there are alternatives. Thanks.

[Buffafly]

Posts/replies about Pace and Ablate are generally very positive - there was one fairly recently. It would be my choice but you do need a full discussion about options others have suggested. I recently had a very useful discussion with a cardiologist who spelled out my options very clearly - take Amiodarone, have another ablation, or have a pacemaker so I have other medication options. I think I’m one step behind you! I’m going for the pacemaker if I have further uncontrollable fast episodes.

[Tricia239 in reply to Buffafly]

My pacemaker only prevents my heart from beating too slowly, I didn’t think a pacemaker could control a fast rate, so I would be interested to hear about that. It’s a bit of a mine field isn’t it?!

[Buffafly in reply to Tricia239]

My heart sometimes beats too slowly but when it beats too fast I can’t take any extra meds to slow it, also (not sure why) any anti arrhythmic to stop it and cardioversion stresses my fused spine. So I either have to accept what AF throws at me or have a pacemaker to allow chemical cardioversion with Flecainide etc or high dose of meds to slow rate. Hope that is clear? Oh, and the pace and ablate would be an option too.

[Tricia239 in reply to Buffafly]

Oh that’s tough, you really have drawn the short straw. Have you ever tried yoga or meditation, before I moved I used to go to a lovely group and I am sure it helped a lot.

[Buffafly in reply to Tricia239]

Tai chi 🙂