AF progression

[Hammerboy]

Hi all , just a general point but as I'm waiting for my post ablation annual follow up I thought I'd ask how others journeys have progressed

I have had PAF for just over 3 years now and after seeing my EP he recommended a cryo ablation as he said I was an ideal candidate and the success rate for someone like me was pretty high .My symptoms were always pretty mild and once I became less anxious I began to accept it was something I had to learn to live with.

It took 2 years before I had the procedure and in that time the progression was slow but my episodes became more frequent, although rarely lasting more than 12 hours .

After the procedure I had many more episodes and quite strong comparably but gradually the time between them got longer and since August I have had 2 ,which self resolved after a few hours .

While in AF I just feel weak and tend to rest until it passes and my heart rate doesn't seem to be that high but I'm just using my finger to feel the beats and I seem to miss quite a few along with some more rapid in between

I've had confirmation from the hospital I will receive a telephone review in June with the arrhythmia nurse ,which will be 18 months after the original ablation .

As for progression does it follow that my current PAF will gradually get worse and eventually lead to persistent , then permanent AF or is it possible I will stay in this condition where the onset is usually random but short lived and relatively mild

I know at the 3 month review my EP said if I still had episodes after 12 months they would consider an RF ablation but is it better to live with it as it is or take the plunge and have another year of recovery .

I'm not concerned about another procedure but do the risks and time to recover outweigh the benefits in the long run .

I'm 66 and relatively healthy with mild heart disease diagnosed as mild stenosis and regurgitation of the atrial valve that I've had since my forties.

Thanks in appreciation for any comments

[Hidden]

It’s hard, and probably not a good idea, to generalise, but I would say that your ablation has been a great success and it’s better now to explore all the lifestyle changes which could perhaps make further burning unnecessary. Electricians have to make a living ...

[Hammerboy in reply to Hidden]

Food for thought 🙂

[Hidden]

As I’m sure you will understand, it’s impossible to be specific if for no other reason, we are different. In my case, I had a Cryoablation but the EP had a problem with one of my pulmonary veins so I had a second RF ablation to touch up the areas missed by the expanding balloon. I continued to have a number of episodes just outside the so called blanking period which were quickly stopped using Flecainide as a PiP. I was scheduled to have a 3rd ablation but since then I have had treatment for an overactive thyroid and I have had no noticeable arrhythmia since last June so the ablation is on hold.

Not sure if this helps you but I guess that if you have confidence in your EP, it’s best to follow their advice and hope for the best......good luck.

[Hammerboy in reply to Hidden]

Thanks I appreciate the reply , I know its generalising and we are all different, I was just really interested to know if PAF developed over time to something more persistent or can stay in the same state long term .I'd rather have ablations at a younger age I suppose

[Hidden in reply to Hammerboy]

Yes, it is commonly known to be a progressive condition and over time, PAF is likely to become permanent but many here have found that easier to come to terms with as long as the rate is controlled. I don’t know if having an ablation (s) changes that progression in anyway. Assuming your treatment is on the NHS, offers of having an ablation are not given lightly and there is no shortage of work as reflected in the waiting times.

[Hammerboy in reply to Hidden]

I find the weakness during an episode the most limiting although as I mentioned I really can't complain from what I've read of others symptoms .Yes mine was on the NHS and I waited a year for the procedure , obviously that can only get longer in the current situation

[Karendeena in reply to Hammerboy]

Hi there, I was diagnosed with lone PAF last July having been admitted to A & E twice with a racing heart about 170+ bpm. Following on from this I have had my medication changed and now on Sotalol twice per day and apixaban.My EP says there is evidence to say that the sooner ablation is done the better chance of success from the first procedure, however he has advised me to wait a while as my afib has changed. I, like you get episodes that come and go and I am aware of the 'fluttering in my chest. Taking my pulse, I notice sometimes a double beat, sometimes a missed beat, it really is all over the place, but stops reasonably quickly. This can go on for several days.

My EP explains that it's like starting a car engine sometimes it 'turns over but doesn't quite start, hence not going straight into full blown afib which I find incredibly frustrating, wearing and scary all at the same time. He also told me it's likely my afib will progress to persistant and possibly permanent but there cannot be a time line on this as it's very unpredictable, it's a chronic condition. He did say though that with PAF there is an 80% chance of a cure at the first attempt, but this reduces greatly once persistent sets in

[Hammerboy in reply to Karendeena]

Thats pretty much exactly the advice I was given but due to the current situation I havent been able to discuss going forward, I've just had a letter advising I will receive a call from the AF nurse

[Karendeena in reply to Hammerboy]

Hi again, the best thing I ever did was research EPs and make a private appointment. Not sure where you live but I am lucky enough to be reasonably close to Glenfield in Leicester, one of the best in the Country. I found Professor Andre G Ng who is Head of Department, specialises in heart arrhythmias and sudden cardiac death. I feel I am in very safe hands and it was worth every penny. I will continue to attend private appointments and see where that takes me. I know then that I am getting the best advice. Incidentally the hospital cardiology department I was under before I moved were supposed to have had a telephone appointment with me in February and I'm still waiting!

[Hammerboy in reply to Karendeena]

I understand your frustration , I was originally diagnosed in Glenfield as I was living in Loughborough at the time but have since moved to Suffolk .I see a private EP recommended to me by a cardiologist and it was this EP that recommended an ablation .He was kind enough to move me up the list of his NHS patients after 9 months of waiting for the procedure . I'm pretty sure when I see him again he will say its probably necessary to have a further ablation to possibly pick up the points missed or reconnecting but again unless I'm happy to pay the £5k to have it done privately it will be a similar or even longer waiting time

My cardiologist recommended a yearly echo to monitor the bicuspid valve and any changes to my mild regurgitation and stenosis but even that has gone 18 months this time

I'm afraid this covid situation has far reaching consequences for an awful lot of folk

[CDreamer]

Just to echo the 2 previous answers - everyone reacts so differently it’s impossible, yet, to predict what will happen. You do a lot to help yourself maintain NSR by reducing/managing stress, moderate exercise, predominantly plant based diet and getting restful sleep.

Living with uncertainty goes with the AF territory and that’s probably what most people find the hardest thing to live with, but that’s the name of the game. If you can feel secure with your uncertainty, enjoy what you have - you are giving yourself the very best chance of not progressing to persistent/permanent AF. Joy produces endorphins, endorphins cancel Cortisol which is the stress hormone.

Sounds as though ablation worked for you. My second ablation left me AF free for 3 years but it did eventually return, the episodes weren’t nearly as severe though. Eventually it did progress to every other day so my EP suggested Pace and Ablate. The Pacemaker on it’s own worked for me and I have only had 2 very short episodes of AF since 2018 so although it is a last resort option, there are always options if your AF does progress and you are symptomatic.

Enjoy your NSR!

[Hammerboy in reply to CDreamer]

Many thanks for that reassuring reply 🙂

[BobD Volunteer]

Just to add to a couple of points. Cryo abalation whilst quick and easy does have limitations and it is quite common to need a subsequent RF ablation to deal with those areas the balloon was unable to reach. I had my final RF ablation for AF in 2008 since when I have had no AF but in fairness I did go on to develop other arrhythmias which still trouble me The ten years arrhyuthmia free were worth everything by the way.

The other important point to remember is that permanent AF is only a statement that both you and your doctor(s) have agreed that no further interventions to attempt to return NSR are appropriate. Until then it is persistent.

[Hammerboy in reply to BobD]

Interesting comments Bob and thank you 👍

[Lilypocket in reply to BobD]

Hi BobDWhat other arrythmias do you have if you don't mind me asking? As your ablations were successful did these develop after the ablation? I'm on the fence about an ablation at the moment.

Take care.

[BobD Volunteer in reply to Lilypocket]

I developed paroxysmal atrial tachycardia about four years ago and had an ablation for that in 2019. I now have what I suspect is sick sinus syndrome as my heart rate varies at will between low fifties and one hundred and ten/fifteen even at rest. Had a 72 hour monitor last week to see what is actually happening. But heh I'm still here!

[Lilypocket in reply to BobD]

And glad I am for it Bob - you've answered a few of my posts helping me once change from Sotalol to Flecainide ( on the advice of my cardiologist). I was a bit anxious about changing and you said " Go for it!" So I did 😊I believe Sick sinus is arrythmia in the sinus node. It sounds like going to a rock concert and raving or chilling with a reefer in your case. What a roller coaster to live with. Would pace and ablate be the answer?

Take care!

[BobD Volunteer in reply to Lilypocket]

I think that might be the light at the end of the tunnel unless it is a train. lol Long tunnel though.

[Lilypocket in reply to BobD]

Well I hope you find a solution. Have you had SSN since your last ablation - what I mean is do you think it is linked?

[cuore]

I support Bob's comments regarding cyroablation. It is most likely that there is still a gap left that was not ablated and that are still allowing signals to get through ( dependent upon the shape of your veins). So, you may view a second ablation simply as a completion of the first. And, as you state this will be an RF ablation, but since probably only the gap may be ablated, it is most likely that the ablation will be short as well as the recovery.

If there is a signal getting through, there is a possibility that this signal will invade the area beyond the pulmonary veins and establish itself. It may take some time, but remember AF begets AF. The more you have AF, the more you will get. To get to persistent, the time period may b e very short (less than a year) or take years depending on the individual. YOur pattern appears to be a slow one.

At your present stage, it cannot be answered if you will get persistent. You will know when you are approaching persistent because your episodes will get more frequent and your duration longer and longer. Why put yourself in that state of constant wondering when you can have a second ablation to complete the first and be done with it ?

[Hammerboy in reply to cuore]

Thank you for your reply, as I said I have no issues with having another procedure .In the current situation I'm probably in the lap of the gods as to whether that will be offered any time soon .I certainly don't feel like my AF has become anything more than improved so that's reassuring but like all of us I guess I'm hoping there's an end to it as its changed our lives

[Sfhmgusa]

A few points I would make , it might be annoying dea to get a Kardia or similar device to check your heart’s performance. It is possible that just using your fingers you don’t get a fuller picture.

As af tends to progress I f I were you( if your EP recommends it) I would consider an RF “ touch up” ablation to try to stop even 2 episodes a year , in 10 years time , when you are 76 this might not be such an easy decision.

Steve

[Hammerboy in reply to Sfhmgusa]

Thank you , thats how I'm looking at things at the moment 🙂

[Hidden]

This paper finds that the time to recurrence of atrial fibrillation influences outcome following catheter ablation: heartrhythmjournal.com/arti...

[fabjabfab]

Obviously I reiterate what everyone else has said, we are all very different.

By way of experience/comparison however, I had Pulmonary vein isolation (PVI) and cavotricuspid isthmus (CTI) ablation as part of the same procedure. The procedure was a long one I went down to theatre at 12pm and came around in recovery at about 5.30pm. But all the problems my EP went after have (fingers crossed) been zapped. I had AF/Arrhythmias/Flutter/ectopic. Sadly, now there is not so much going on my EP has confirmed I have another Flutter which he could not see before so I am yet to be discharged from his care. Three monthly ECG's for the foreseeable future and I send him a collection of ECG's from my watch every two weeks (taken at random points throughout the day, esp while exercising).

So my EP opted for two birds with one stone approach.

[Davg7]

I can tell you my experience. I’m 68 male in good health in a rural part of New Jersey. No CV issues or stenosis, an aortic value replacement 3 1/2 years ago because of moderate regurgitation, then an unfortunate case endocarditis 3 years ago ( mind your dental health carefully). I’ve had Afib for a dozen years, starting very occasionally , then with steadily increasing frequency and length, well controlled by flecanide first as pip then daily and pip ( mind the max daily dose), and off flec after the valve job. Afib got worse flipping to full time. I went for a RF (point by point) ablation 9 months ago, no Afib since and off warafin last month.

I’ve said this before, research ablation types, EPs, and heart centers. Find a highly trained and experienced EP with a highly rated major heart center. My ablation took 4 hours with an overnight stay.

[Hammerboy in reply to Davg7]

Many thanks

[Snowgirl65]

As far as progression of a-fib, I found that was the case with me, but in a very long term, i.e. years, in fact. However, the 3-month blanking period after my 2019 ablation caused an uptick in episodes, I had no episodes the following year. They've increased again, and after having Covid in December, increased even more. I'm looking into a second ablation at this point. Hope this helps.

[Hammerboy in reply to Snowgirl65]

Yes it does thanks

[sdweller]

Generally, it does progress....but not ALWAYS does it progress to full-time afib... I've had it for over 25 years, and my EP at the Cleveland Clinic believes it probably will NOT progress to chronic. everyone is different.

[Hammerboy in reply to sdweller]

Thank you 😊

[Jetcat in reply to Hammerboy]

I have Afib and have also wondered if it always progresses.? But I also know a friend who has stayed paroxysmal for nearly 30 years. We are all different.?

[Hammerboy in reply to Jetcat]

Thats reassuring to know , thanks

[Jetcat in reply to Hammerboy]

No problem mate.👍👍