Heart appointment tomorrow

Just to clarify, in the unlikely event of pm not working, you will still have a small amount of residual function across the AVNode. Enough to keep you alive for about half an hour or so. You'll feel dreadful and unable to function but it does give some time for a medical intervention. However, failure is incredibly rare tbh I'm much more likely to die in some other way!
My EP did offer an ablation for my flutter but it didn't have a high degree of permanent success and it would have been a very lengthy procedure under heavy sedation. The AV node ablation is very quick, straightforward, less risky and has a very high success rate in terms of improving QOL. Mine took less than an hour. I think the most important thing is to ensure your pacemaker settings are correct for you. Mine were most definitely not but I had someone who listened to me and was prepared to make fairly radical changes to the modes and the parameters of the rate. Please don't hesitate to contact me by pm if I can help in any way.

Thank you for the good wishes.
I am hoping that at least some of the symptoms will subside sufficiently for me to be able to plan may life and be more active.
Things are also complicated by whether fact that I have a stent in right coronary artery.
I feel totally bowled over by all this as there is no history of heart disease in my family and my build and lifestyle do not make me an obvious candidate for all this.
Sending good wishes to all.other heart sufferers.

I think you may have a similar pacemaker as mine was put in for LBBB and a partial heart block. Boston Scientific Ingevity dual lead? My heart doesn't like being messed with so a few days after my AV node ablation I went into a 15 hour bout of flutter, unfortunately my pacemaker had not been programmed correctly (left in factory mode!). I knew something was wrong but tbh I was not having the usual fast HR (150bpm is my usual) but my HR was stuck at 70bpm regardless of what I did. I did find it very scary but actually the pm was doing what it was programmed to do not what it should have been doing once I had had the AV node ablation. However, I was perfectly safe but not entirely functioning on full capacity. If you are very symptomatic, I think you will notice a huge difference in how you feel. I did a lot or research and most people are significantly better after the procedure. Best wishes for a really good outcome and please let me know how you get on.

Thank you for telling me your experience. I am pleased it has been so positive for you. That sounds wonderful.

My pacemaker was put in because of drops in HR that they thought might be triggering my AF episodes. However these have continued and got worse and now I am dipping in and out of AF all the time with virtually no respite.
I am lucky that I only rarely get very fast HR with it but even when slightly raised I am very symptomatic ... chest pain, breathless, giddy etc. Medications have not worked or given intolerable side effects.
They have said that the AV node ablation will mean the disordered atria will continue to be so but not be transmitted to the ventricles so they should not trouble me or give me the same symptoms.
I am hoping they are right.
I have a state of the art left bundle branch pacemaker which is said to be especially suited to having an AV node ablation.
Hoping for the best ....

I had an AV node ablation in July. Yes it is a fairly big decision but I had had a pacemaker since May of 2024 and tbh I trust my pacemaker more than I trust my own electrical system. It has enabled me to reduce my medication significantly and I feel as if I have walked out of a fog into the sunshine. I sleep better, have more energy and I don't have that horrible foggy feeling that made me wonder if I was starting to lose cognitive function.
I don't have sick sinus disease and I'm fortunate to be able to regulate my own atrial rhythm as long as I am not in A flutter. If I go into flutter my pacemaker immediately takes over the atrial as well as the ventricle rhythm, it is seamless and the only way I know this has happened is because my resting HR changes from 60bpm to 70 bpm. My pacemaker team have been excellent and I'm back at the gym four times a week, walking the dog without pain or breathlessness and generally I'm a lot fitter than most 77 year olds.
I can only share my experience but it's been life changing and I'm so grateful to have had it done. Everyone has noticed the change in me. Good luck and I hope you get a good outcome. I don't think of myself as being pacemaker dependent, I just have a battery operated pacemaker that looks after me instead of my rather unreliable one which allowed my heart to do potentially dangerous things!

Wishing you all the best Luckygirl

Wishing you all the best x

Very difficult situation Luckygirl I do sympathise. What would your DH say if he was himself? If you know what I mean. Hope all goes for the best.

Wishing you all the best, Luckygirl3.

I’m sorry you are facing these problems, Luckygirl. I recently met a friend for the first time since Covid, during which time she has developed AF. I was shocked at the change in her, she has aged so much and her life is so curtailed. There are no more drugs that can be used and she has been told that she isn’t suitable for ablation. It’s so sad and depressing to see someone in that hopeless situation.

On the other hand, a younger friend underwent the ultimate in heart surgery and had a heart transplant this year (for different issues). She made a rapid recovery and has had an extraordinary new lease of life. It’s been miraculous and definitely worth the risks of the operation.

Wishing you the best. Xxx

I too have AF, since the summer, and have been started on a beta blocker plus a blood thinner, the side effects of which is dry eyes. As I already suffered with dry eyes I now have very dry eyes. My optician did a direct referral to the hospital Ophthalmogists who I saw last week and have prescribed stronger eye drops and steroid drops (for 8 weeks) until I have a follow up appt.
As for the cardio side of it all, I have an Echocardiogram booked for next Tues. I suppose the results of that will determine what further treatment/intervention will be required.

Good Luck on your progress

I have no knowledge of av node ablation. However I do understand your
fears . It certainly is a huge decision you have made! However I imagine you have considered the implications of not having it done and have come to the conclusion that your quality of life will be much improved if you go ahead. I wish you well in every sense of the
' word ' . Good luck, keep posting on your progress.

Luckygirl3 I hope your appointment answered your questions and has given you some reassurances going forward.

I am sorry that you too have this annoying condition.

I think the reasoning in my case is that I am unable to tolerate the drugs for AF and my quality of life is really quite poor. I do of course continue to take the coagulant to reduce the stroke risk and will have to continue this after the procedure.

I already have a pacemaker in place for another reason so the av node ablation is a much less difficult procedure - at least that is the hope.

All I can do is hope for the best.

I hope you are fully recovered from your virus.

I’ve had permanent AF for over ten years. A cardioversion put it into normal rhythm but it reverted, as happens fifty percent of the time. The cardiologist didn’t believe a second cardioversion would be any more effective. He also said an ablation carried risks he didn’t see as warranted at that point.

I take apixiban and a drug to try and moderate the af. I came of bisoporol as it wiped me out.

During a recent A and E admission (awful virus) the consultant told me my compliance with meds reduced the stroke risk by seventy percent.

Best of luck lucky

Yes I agree - and very best of luck with your final decision.

Keep us posted nearer the time😊

Luckygirl, I don't know much about AF but I just wanted to wish you well for the future. 💐

I don’t think the cardiologist would suggest such a step unless he knew it would be the only thing to improve your quality of life.
But is your decision to make. And I wish you well whichever road you take x

Good Luck Luckygirl
Put your trust in the medical profession - they know what’s best for you.

It is a "no going back" scenario. Once it's done it is permanent.

Seen EP cardiologist today. He recommends ablation of the av node and leaving me totally dependent on the pacemaker. Feels like a huge step. Three month wait. I have signed the forms but I can obviously withdraw during that time. He says it's either that or go on with all my current limitations. I'm working on the principle that he would not recommend it if he did not think it was the right thing. Hope I'm doing the right thing ..... time will tell.

I already have the pacemaker - it was fitted in April - so if they do this AV node ablation, I am all set up for it.

The sort of ablation I think they will be looking at is not the sort you can repeat if it does not do the trick - it is a once-for-all procedure that means my heart will never be able to instigate beating by itself but the pacemaker will have to do this.

I am so torn - do I want the lesser procedure that is known to need repeating? - lots of time wasted on it all when I can't get on with my life. Or do I want a chance that a procedure will stop it all for good and I can do the things I want to do?

I am aware of time ticking by and that my other health problems mean that I only have a brief window in which to do the things I want to do before I will be sitting in my armchair for good.

Babs03 - I am so sorry that your OH has had so many challenging complications with his AF.

Sarnia - you are right that only a fellow sufferer knows how ill they make you feel and how life limiting they are.

Big decisions ahead .......

Just to say that fitting a pacemaker, whilst not something you’d choose, seems a straightforward procedure. It is done under a local anaesthetic. In fact last time DH’s was replaced, (june) he phoned me to pick him up after an hour and I picked him up walking up the road towards the route he knew I was taking in the car!!

My DH also has had AF for a few years now, he had periods of a very rapid heart rate - over 200 bpm - which frightened us both. He has beta blockers now which thankfully help but the most dramatic help has come from us swapping to decaffeinated coffee, since we made the swap he hasn’t had a single episode of AF.

The problem of AF is in DH’s family, two paternal aunts had it and his paternal cousin has it too, she is in Canada and had a pacemaker fitted a few years ago, it did help but she had a few episodes of a very low heart rate so has had ablation and it has helped her. I understand your apprehension but I would be guided by the Cardiologist.

@sarnia

Thanks. Sadly he also has the complication of spontaneous bleeds on the brain since having the stroke so long term thinners cannot be given, he is, however, taking low dosage thinners since the op, until Feb, because despite his bleeding condition no op can occur without thinners, or the risk of clots increases again. Is a vicious circle.
Will just be glad when he goes for a heart scan in feb then he should be able to stop taking thinners.