AF Association
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Pacemaker with AV node ablation

We all know there is no cure for AF. We also know that if left untreated AF can lead to stroke. My journey over the last 25 years has been a long one, culminating in three ablations which certainly gave me relief for a while, and medication which now gives me more problems than they are worth. In short, the aim for all of those with AF is to manage to a degree which give a good quality of life. I have finally reached the point where the qol is going rapidly downhill. Therefore on Tuesday, I go in for the fitting of a pacemaker - followed in four weeks time with an AV node ablation. This, I am told will hopefully improve my quality of life, although obviously the AF will continue but not affect me. I would be telling an untruth if I were to say that I am not a little apprehensive, not about the procedure, but the outcome. I have scoured the posts with very little feedback, although one fine lady, Irina who is in America, has been very helpful. For me the option of severely cutting back on the everyday life that I have, is one that I am finding difficult to accept, I have happily modified and compromised on many things as one does, but in the final analysis even this has not stopped the relentless march of AF and its effects. Any feedback would be gratefully received!

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What a lovely, thoughtful post Annelizabeth, I guess the problem is you are talking about an area of treatment which is quite specialised and about which, is outside most members area of knowledge. I’m not a great fan of Facebook, but recently, I have had some helpful contact with Dr Sanjay Gupta and he is currently looking for suggestions for content for new videos so that may be worth a look. Of course you are apprehensive, but it sounds as though you are getting good medical support so all I can do is wish you the very best of luck for Tuesday and next month. John

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Thank you John for your reply, I will certainly have a look at your suggestion.

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Hi AnneElizabeth - I am in a similar position - I can’t take the meds as they exacerbate another condition so don’t take anything other than ACs.

P&A will be the next step for me but I am hovering as it is a big step and I think there comes a point when you go over the pivot point. For what I can gather - the procedure and outcomes from it have improved greatly over the last few years. I remember 4 years ago reading about people who had had the procedure - but it was very much a last resort and I got the impression that they were in Heart failure so a necessity rather than a choice.

Technology has moved on so much since then as have the expertise and knowledge of the EPs so I am much more encouraged also by Irina’s experience and feel more hopeful.

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PS - good luck for Tues and do let us know how you got on.

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Best wishes, please let us know how you get on. I am very interested as one of the reasons I stay on this forum is to read personal info re pacemakers as my cardiologist said a pacemaker would be my only option if my ablation failed as I can't take meds for AF.

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Best wishes with your procedure Annelizabeth. Dr Gupta is willing to answer questions, too - although it is a couple of years since I emailed him and received an almost immediate response.

Do let us know how you get on.

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I think his opinion on the general procedure as far as helping those with AF are concerned would be very valuable. But obviously on individual cases he would need to see all the medical notes before he could give any credible opinion. I will certainly let the forum know how I get on.

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I had a pacemaker inserted in October 2016 and it completely changed my life for the better. However, I did not have an ablation as I have infrahisian disease, which I understand is very rare, and means impulses not always transmitted to stimulate ventricular contraction. I went from not being able to get out of bed to working full time, although I opted to reduce to 15 hours a week. I am aware I am in permanent AF and take Rivaroxaban. I also went on holiday to Costa Rica in November , I couldn’t have done that without the pacemaker. Wishing you all the best.

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Thank you so much for your reply.

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Apprehension is normal I've had pacemaker since Aug 2014 that and meds have improved my quality of life. Coming up to 63 next month and go to gym 5/6 days a week. Had five yrs off before that. Mine set at sixty beats per minute and another part kicks in when I exert myself allows up to 125 BPM. I'm pleased with my outcomes good luck

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Thank you for taking the time to reply, you have no idea how much the words of encouragement have helped.

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Your welcome

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Thanks for sharing that. Helpful to many of us who know we are on the road to a pacing device

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Hi Anna - I am in permanent AF and have been told by my EP that my last resort if a pace and ablate and this is what he recommends. I am still mulling it over. He has said that I will come off all meds except the the NOAC. My AF will still be there but hopefully will not bother me, but it will help my hear failure (this is most of the time fairly mild) as my heart will have a regular heart beat, whereas at the moment if jumps all over the place ranging from 70 to 120 and at times quite long sessions 150-200. So I have to make my decision in the next few months.

Cassie

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Good morning Cassie. Thank you for the reply - I think I am finally there with my acceptance of the pacemaker and the later AV node ablation and that realisation is because if, suddenly for whatever reason, the procedure was not able to go ahead, I would be incredibly disappointed and truly worried. So He does work in mysterious ways - but I have finally got there!

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I am still on meds

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AnnaElizabeth I also have has an AV node ablation for persistent AF after 10 failed ablations, one being done as open heart.

The AV node ablation was the best thing I ever had done. Mine was in 2015 and since then I've never been better. I've started to live my life again.

I know the thought is scary. I fought against it for a full year (spent the whole time in hospital bar 2 months)

Trust me u won't look back.

Be kind to yourself rest up. Normally takes a few months for heart to settle down but afterwards is fine.

Good luck.

Vicki.

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Thank you Vicki so much for such an encouraging reply. Truly grateful.

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Annaelizabeth

I have been in the medical field for over 15 years now. I specialized in cardio/thoracic surgery and have moved into treatment of AF.

When I hear someone say there isn't a cure for AF I find it disheartening. Unfortanelty there are many cardiologist who aren't fully aware of the options that are out there for patients. The majority of them turn to rhythm or rate control drugs and don't look beyond the EP world for help.

Many of you would be shocked to learn that surgery is considered barbaric to EP or Interventional Cardiologists. It is difficult to convince them that surgical stand alone epicardial Afib ablation procedures are an alternative to being ablated endocardial.

For those who suffer from persistent or long standing persistent Afib these procedures have great results in freedom of AF. I believe the world of Afib is becoming more and more educated but unfortanelty not fast enough.

Some of the surgeons making a difference:

Dr. Randall Wolf in Houston

Dr. Gan Dunnington in St. Helena, Ca.

Dr. Marc Gerdisch in Indiana

All in all I wish you peace and better health. Best wishes in your journey of Afib. I hope it gets better.

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Hello,

I just had my second ablation. The first one was extensive and did not work. In the fiirst one I had fibrosis in the Ra and none in the La. But had a lot of flutters, a lot of lines drawn. Four months later had a secon and my LA. Had moderate to extensive fibrosis and I have to stay on drug and a variable flutter cannot be controlled and my mytral isthmus was not fixed . can the surgery your speak of still be done on me. I am afraid that I will break through on the drug bc I have 3 months and four month after the procedure and the afib which lasted only 2 hours lasted for a day and 1/2. Is this new surgery or proven surgery

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Thank you for your kind thoughts. Wonderful to see that alternatives are being explored, and that hopefully others will benefit from the different approaches. For me personally though, I am content with the highly skilled team that look after me here in London, I am not a pioneering sort, a quiet confidence in their approach is hugely comforting in a not very brave person!

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Hi Annaelizabeth. My dad has just resent my had pace and ablate. He had the pacemaker put in at the beginning of November as an emergency then 27th December he had the ablation bit done. His ejection fraction is only 10-15% so not good. We hope it improves over time as the heart won’t be beating as fast so has time improve. He is breathless but could be because his heart rate is set to 90 bpm. He goes on 5th February to get it turned down to 70 bpm as cannot set it too low too soon as it will do more damage. He can get about but slowly but it’s a long process for him to get better. The consultant said 18 month for him to get back to normal. Obviously everyone is different and I don’t know what you’ve been through or what your EF is like. We thought we would see an improvement straight away but not so much. He hasn’t regretted it at all though as the meds and ablations never worked for him. Good luck for Tuesday, hope you can update us with your progress as would love to hear from you x

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Thank you for your reply. I will certainly update on my progress. Our circumstances are all different and therefore the outcomes of the various procedures deemed the right course, variable. All I realistically hope for is an improvement in the quality of my life, which for me would be a real result! I so hope you father continues his steady improvement.

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Hello Annaelisabeth, I was very interested to read your post as I face a similar situation. Also very good to read all your replies as it seems there are not so many comments on this forum from people who have had a pace and ablate procedure. I wish you the very best and I hope that you will feel much better for it. Please let us know how it goes. x

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I will, and thank you for your good wishes. Have a feeling that the pacemaker alone will not make a huge difference, but the AV node ablation a few weeks later might, god willing!

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Hi Annaelizabeth I see it has been 4 months since you had your P&A procedures. That is about the same time since I mine and I am wondering how you are.

Hope you dont mind me asking, I read your post and replies with interest as I was a bit nervous myself. Hope you got on ok and youre now feeling better.

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It will be interesting to compare notes! Although the AF is obviously still there, I do not feel it at all and have absolutely none of the ghastliness that went with it. Also the joy of being off any of the meds (except warfarin) used to try to alleviate the AF, that had awful side effects is huge. The only downside, and it is very small in comparison, is that I don't perhaps have the oomph level that I used to have pre AF days. However those days were 8 if not more years ago, and I am therefore 8 years older - which may have more to do with it! All I can say is at this early stage is that I feel well and my confidence in being able to cope with everyday life has come back, much needed when you live on your own. To those who have been offered the procedure I hope the above will help. I so hope your recovery has been a successful one and given you the same relief.

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Hi, My Mother has the pacemaker implanted 4 weeks ago and is going to have AV node ablation this week. How has it changed your quality of life. Does it make you tired?

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I can only reply for myself. Yes it has made a big difference to the quality of my life. The most important one is that I no longer feel the fibrillation and therefore am not affected, however I will say that there may be times that I am 'aware' of it, very difficult to put my finger on exactly what, just an awareness. No drugs at all, only warfarin is non-negotiable. Sometimes I feel a little weary, but I am now 69 and perhaps allowed to! I started back in the gym, weight resistance, and back with pilates/yoga, ticking along well. I have never had one moment of regret since having the whole procedure was done. I am hugely grateful for my quality of life, and take non of it for granted. I would say to your mother, take it gently, but don't wrap yourself in cottonwool gradually the energy will come back and the confidence to just simply enjoy the future. With best wishes.

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