Pace and Ablate for Persistent A fib - Your Experiences?

[Diddyd]

Hi

Whilst in hospital over Christmas, it was decided upon a pace and ablate for my a fib which is now persistent and has given me cardiac decompensation.

However, there was a U turn and the consultants decided to try me on further drugs and give them a bit of time first. I was discharged on 10 mg bisoprolol once day; 125 mcg digoxin once a day; Adizem SR 120mg twice a day; Furosemide 40 mg twice a day and 5mg Apixaban twice a day.

It made my heart 'safe' to come home but not stable enough so the Gp was asked to up the dose of Adizem in a week or so time after discharge. A week later, the GP arranged for the pharmacist to speak to me and she was unhappy in raising the dose due to my low side of normal blood pressure readings (this was the same value when in hospital)

I was then seen in outpatients for review by the EP I had seen when I was in hospital. After an ECG which showed fast ventricular response; the EP felt that there was no merit in raising doses further as my HR was still 130bpm at rest so the drugs were having little impact. We were back to pace and ablate. He has put me on waiting list( 4 weeks wait) for a CRT device and then 4 weeks later a AV node ablation.

Although I went through all the pros and cons for hours and agonised over the decision ( see previous posts) I felt at peace with this decision for pace/ablate over an ablation.

However, I would like to hear from people who have had a CRT implant then node ablation for A Fib ( and with or without cardiac compensation) and what their experiences have been. I understand that the A fib remains but am wondering if the SOB; dizziness; liver pain; abdominal swelling; tiredness; ejection fraction improves?? And how your recovery went.

I have been really helped by previous comments on prior posts and look forward hearing your shared experiences. Thank you

[Palpman]

I don't have a pm but I'm inquisitive about this subject.I know that when the AV NODE is ablated then the Atrials will carry on fibbing.😊

Can the origins of the rogue Atrial pulses not also be ablated and thereby leave you free of any AFib?

[Diddyd in reply to Palpman]

Yes, you can have an ablation afterwards for the AFib if required. My EP days he has done that for some patients and the door is never closed.

[BobD Volunteer in reply to Palpman]

If the origins could be ablated then you wouldn't have AF in the first place.

My understanding is that since the ventricle is paced by the PM then heart rate is normal and so should BP etc removing most of the symptoms of fatigue allied to the condition.

[Palpman in reply to BobD]

I was too hasty and thoughtless when I posted that. Thanks for pointing it out Bob.

[Buffafly]

I suggest you read CDreamer’s posts.

[Buffafly in reply to Buffafly]

Also people tend to swan off into the sunset afterwards so maybe an HU search might help.

[Diddyd in reply to Buffafly]

What is HU?

[Buffafly in reply to Diddyd]

HealthUnlocked - the website we’re on. Little magnifying glass top right on my page. You can also just search AFA community the same way.

[Diddyd in reply to Buffafly]

Thanks

[Hidden]

That does seem to be a hefty dose of drugs, must feel like you are walking in treacle! Hope you get it resolved soon......

[Diddyd in reply to Hidden]

Is pretty tiring!

[Marina_D]

Hi Diddyd, I had a pace and ablate in 2019, after doing some research etc. This was to control my unruly Afib and Aflutter. My heart did not do very well with meds, I was on only low dose bisoprolol and it didn't stop Aflutter from kicking off and I was beginning to get pauses and brady episodes so couldn't increase it. One extreme to the other. Flecanide had no effect at all.

As far as I know the paroxysmal Afib/Aflutter is now permanent since having the procedure but I can't feel a thing. The AV node ablation took care of that. After a few tweaks we settled on a base rate of 70 bpm, that was the most comfortable for me. The cardiologist who fitted the pacemaker set it at 80 bpm, which was ok. When I had the ablation (a different cardiologist) it was dropped right down to 60 bpm. My heart wasn't happy with that so I asked to be increased. He agreed reluctantly after I insisted. I knew what my body was needing in that regard. All good since then 😊

Hope your heart settles down soon and that it makes a huge difference to your quality of life Diddyd. I know I was so glad to have had this option to chose. I now wake up each day knowing that my heart will meet the demands placed on it. It is lovely to feel the strong steady, reliable beat, instead of feeling the 'jumping around' uneasy feeling, with associated brain fog and slight breathlessness, stopping me in my tracks.

Hope my experience helps to encourage you?

[Diddyd in reply to Marina_D]

Thank you for sharing your experience. It is good to hear what the other side might be like. Especially as time gets nearer to have it done I begin to question whether I have made the right choice and will I regret something that is so final. Human nature I guess. It is good to have positive experiences to keep the nerves steady

[Alphakiwi in reply to Marina_D]

It is great to find these peronal stories. Thank you. I am on a waiting list for pace and ablate after 1 cardioversion 2 years ago and no success with drugs. I am on diltiazem for now but it is a low dose which i take whenever i really need it especially at night. I am now getting very tender and sore ribs mainly on left side. Hopefully that will go away also after the pace and ablate.Its not to hard for me to decide on going with this procedure because theres really nothing else and i am finding it really hard to put up with the rat in my chest, tiredness , wobblyness and nausea. I have it just about every day and night.

[Diddyd in reply to Alphakiwi]

It can be hard living with some pretty rubbish symptoms on a daily basis. With lockdown I don’t really leave my house and get fooled into thinking I am not so bad. One 100m walk to get my vaccine was enough of a reminder that I am not ok! From my original post, I was put in high priority for CRT-P fitting. It should have been a 4 week wait but ended up being 8 weeks.

I had the device and 3 leads implanted 2 weeks ago. There was some pain afterwards due to the surgery but nothing that paracetamol did not sort out and I only needed this for a day or two. This was a pleasant surprise!

To start with, it was easy to not move my arm too much but my shoulder got sore. I got some great advice from a couple of people, one of whom was a physio, to lean forward carefully allowing my arms to dangle. Then very slowly and in very small movements, allow the arms to circle. This improved things greatly and I had no further shoulder trouble.

I am now waiting for the second stage .... the ablation of the node. Again I am high priority and it should be within 4 weeks but can take longer due to COVID. I am expecting it to be similar to last time and I get a phone call with a week’s notice. The EP did say if I get more unwell, to call him and he will do as an emergency.

I am high priority as the AF has led me to have cardiac decompensation with some pretty horrid symptoms. Not everyone who has AF develops this so please don’t think your health journey with AF means inevitably the same thing happening.

The strangest thing that I cannot get my head round, is that they have not actually switched me on yet and are waiting for after the ablation. I thought the delay was to make sure all was working before taking the final step.

Anyhow I trust in their wisdom.

I hope you get a date for the procedure soon

[Shcldavies]

I don't have enough knowledge about this to offer an informed opinion, I suggest there are two things in you favour. It is the Doc best judgement (they know best) and as an earlier post said the people who have had it done seem to leave this forum (or at least not participate too much) which is normally a good sign of its success. I would guess that there may be some slight changes to your life style but these would be by far off-set by the improvement from being in NSR and of course from not taking the medication.

[Barlick43]

I had responsive pacemaker 2012-2018 and then it was switched after sinus node ablation Cos I was and still am in permanent fibrillation. My pacemaker dependant mode seems ok and I have had non of your symptoms

[Eastwick]

I had pace and ablate about 6 years ago. It was the best thing I ever did for my paroxysmal af. I am set at 60 bpm and it seems fine. I have apparently gone into permanent af but am completely unaware of it which is magic as I used to collapse all over the place as it was so bad before. Hope this helps.