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Atrial Fibrillation Support

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So disappointed

Slidingdoors99 profile image
32 Replies

For those not familiar with my journey so far. AFib diagnosis four years ago. Thought to be due to an inherited heart condition HCM.

Two ablations at BARTs in London, the last one was in May.

AFib returned last week. Damn it.

Saw my consultant today in Taunton and am now on the waiting list for a dual chamber ICD pacemaker. Also pace and ablate.

I have been reading so much in the last four years and thought that I understood quite a lot, but was totally shocked today when told that even pace and ablate wouldn’t cure my AFib.

I don’t have ‘episodes’ when I’m in Afib(always fast AFib) I can only get back to sinus rhythm with a cardioversion.

I need the ICD part incase of more serious arrhythmias in the future.

Thought Pace and ablate was the final answer?

I just don’t understand.

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Slidingdoors99
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32 Replies
mjames1 profile image
mjames1

That's correct, pace and ablate will not get you out of afib. But what it will do is keep your heart rate controlled, allowing you to get off of some heart rate meds, which often can improve your quality of life.

Have they discussed surgical ablations with you as an alternative to pace and ablate? Sometimes these can help if catheter ablations cannot.

If Barts doesn't do surgical ablations like mini maze or hybrid, you might then aim for a consultation at another facility with a doctor that does.

One such doctor is Steven Hunter, Consultant Cardiothoracic Surgeon at Northern General Hospital, Sheffield. 

Jim

Slidingdoors99 profile image
Slidingdoors99 in reply tomjames1

Thanks Jim, no, surgical ablations weren’t talked about today.

I will look into it.

Thank you again.

Tangalle profile image
Tangalle in reply toSlidingdoors99

Definitely worth looking into surgical ablation as James mentioned to see if you would qualify. The cardiothoracic surgeon mentioned performs it thorascopically.

MummyLuv profile image
MummyLuv in reply toSlidingdoors99

Definitely look into mini maze before going down the pace and ablate as losing your natural pace maker is irreversible so worth exploring all options before seconding on this. The royal Brompton is your narrate hospital I am aware of doing hybrid/mini maze

Slidingdoors99 profile image
Slidingdoors99 in reply toMummyLuv

I will ask about it. I was wondering if it hadn’t been mentioned as an option for me because of my hypertrophic cardiomyopathy?

Perhaps St Barts might offer a mini maze?

I’m in Taunton but my two ablations were done in London because Bristol refused!

Buffafly profile image
Buffafly

Hi, the atria will continue to fibrillate but because they are no longer connected to your ventricles your heart beat will always be regular thanks to the pacemaker. So unless you are one of the unfortunate people who can feel the atria fibrillating you shouldn’t be aware you’re in AF and your heart will no longer be damaged further. Best wishes and please let us know how you get on, we’ll have to have another Coffee #1 meeting!

Considering your history and the possibility of other more dangerous arrhythmias I doubt whether a mini maze would be offered and tbh you would be much safer getting on with the P&A asap, but that is just my personal opinion of course.

Slidingdoors99 profile image
Slidingdoors99 in reply toBuffafly

Thank you and yes me should have another coffee at some point for sure!

I can feel the vibrations 100mph shaking constantly. It’s horrible. 😢

Buffafly profile image
Buffafly in reply toSlidingdoors99

Those would be from the ventricles so you won’t feel them after the P&A. I did feel both at once one time - irregular thumps from the ventricles and a whirring sensation higher up - now that was weird 😱

SuziElley profile image
SuziElley

I’m so sorry to read this and also aware we still haven’t had that other coffee! I don’t know where the days go……..

At least you got some answers from cardio in Taunton today, just wish it had been better news for you. We must try to meet up again before Christmas. Meanwhile, take care of yourself. Big hugs 🤗

Slidingdoors99 profile image
Slidingdoors99 in reply toSuziElley

😘

CDreamer profile image
CDreamer

You may still feel AF after P&A but because your HR and subsequently BP, will be constant instead of fluctuating, your pulse will be steady and many people find that their QOL is improved as a result.

It’s a hard one when options become so limited, comisserations.

Slidingdoors99 profile image
Slidingdoors99 in reply toCDreamer

Thanks Dreamer. He could see the disappointment on my face clearly yesterday…

He told me that I might well feel better with a slow and steady rate, but couldn’t guarantee it.

Thomas45 profile image
Thomas45

Sadly there is no cure for AF. I've had it on and off for about thirty years, but mine reacted well to medication (Flecainide). Now my AF is permanent, but asymptomatic. I take only an anticoagulant because of it.Yours sounds much worse than mine. Others will be able to give better advice.

Ppiman profile image
Ppiman

The atria can pretty much do their own thing and all stays well so long as the ventricles are under control of the PM. Cut off the signals from the atria via the AV node and you can make the ventricles pump at the rate you wish and as regularly as clockwork.

Steve

Slidingdoors99 profile image
Slidingdoors99 in reply toPpiman

Thanks Steve. I wonder if the AFib is still going on though, will I still feel the horrible fast shaking and the sweating and breathlessness?

Ppiman profile image
Ppiman in reply toSlidingdoors99

I gather not. Those symptoms come from the ventricles which will be under full control of the PM. I’ve read that we can’t actually feel the atrium at all, in fact, only the pressure waves caused by the valves closing and even then in the circulation nearer the surface where sensory nerves lie.

Steve

Singwell profile image
Singwell in reply toPpiman

Interesting- makes sense. You're a mine of info!

Ppiman profile image
Ppiman in reply toSingwell

That's kind! I needed a boost today.

Steve

Slidingdoors99 profile image
Slidingdoors99 in reply toPpiman

Thank you SO MUCH! Feeling hopeful now! 😊

Ppiman profile image
Ppiman in reply toSlidingdoors99

I might be having the same at some point. It was mentioned the last time!

Steve

Slidingdoors99 profile image
Slidingdoors99 in reply toPpiman

I see! That’s why you’re so knowledgeable!

Steve, once they’ve ablated the node, I suppose if the machine fails that’s it then?!

PS My local hospital are asking StBarts for advice. They may offer me a third ablation, but it’s very doubtful.

Ppiman profile image
Ppiman in reply toSlidingdoors99

No - good old evolution has sorted that out, even. If the PM battery runs out, then the heart has a default beat that is too low for doing anything but keeps you alive, or so I have been told and read! I think it is in the 30s and fixed.

Steve

Slidingdoors99 profile image
Slidingdoors99 in reply toPpiman

Thanks again! I have been doing some research too Steve and it tells me that it’s the atrium that fibrillates, not the ventricle!

Oh heck!

Ppiman profile image
Ppiman in reply toSlidingdoors99

The ventricles can also fibrillate; and the usual name for that is a heart attack! Hence those public defibrillator machines here and there. That's somewhat different from what we have. ;-)

I often wonder how useful those would be because there are only a few minutes available to get those paddles in use (I believe).

Steve

Slidingdoors99 profile image
Slidingdoors99 in reply toPpiman

Maybe that’s why (if Barts say no to my third ablation) it’s suggested that I have a dual chamber ICD and Pacemaker implant?

I’m now on the waiting list for that and it’s only 6 weeks, so not much time to decide! 😱

Ppiman profile image
Ppiman in reply toSlidingdoors99

Do you feel that your specialist has given deep enough thought to your issues? I do often wonder how much time they have for each of us. I am thinking of paying privately before my ablation comes up to be sure this is the best way to go.

Steve

Autumn_Leaves profile image
Autumn_Leaves

So sorry to hear that your ablations didn’t help you in the long term. I don’t know much about pace and ablate but quite a few people here have had that procedure and are living a good life. I’m sure they’ll be happy to share their experiences. I hope you find the solution that helps.

Slidingdoors99 profile image
Slidingdoors99 in reply toAutumn_Leaves

Many thanks.

Kimmieblue profile image
Kimmieblue

I'm as you are....absolutely sick of AF, it completely controls your whole life, its always on your mind even when you're in NSR. I've also had 5 ablations, and awaiting the 6th, I'm not sure it'll work but I'm in the hands of my cardiologist at the Bristol Heart Institute, and can only take their advice.

I did wonder about Pace and Ablate too but they want to try another ablation.

Anyway I wish you all the best for a good outcome.

K.

Slidingdoors99 profile image
Slidingdoors99 in reply toKimmieblue

Thank you for your post. Don’t you mind as well that most people just don’t seem to ‘get it?’

There’s nothing to see and you can describe the feelings but then someone will say ‘Oh yes, my friend has AFib and she didn’t even realise until she went for a general check up!’😱

Kimmieblue profile image
Kimmieblue in reply toSlidingdoors99

I know, that's right, it's like nothing to some people, but oh my word, if they had it they'd know about it!!! 🤨

Slidingdoors99 profile image
Slidingdoors99 in reply toKimmieblue

Absolutely!

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