My Post PVI ablation horrors take a turn for the better!

[Tennisking]

I’ve read so many experiences that people have kindly shared with the community of fellow sufferers that I felt compelled to share my own, and hope that it is of some help to anybody who has PAF and wondering about undergoing an ablation or maybe if you are recovering from one!

I’m a pretty fit 61 year old (ex advanced level tennis player) and have been suffering from PAF for at least 6 years.

I was offered, but rejected an ablation 4 years ago as I knew it wasn’t full proof, may have to have the procedure more than once, and it’s not a cure. Basically, I self-managed my episodes by mostly weathering the storm or taking a Pill in the pocket approach (with Flecainide). Flecainide failed to control the AF so I gave up taking it on a daily basis. I stopped playing tennis and golf years ago as they just encouraged lengthy attacks of AF. My AF episodes seemed to get longer (upto 24 hours) and I would have these about a handful of times a month.

My family are all keen sports players so I am now clearly the odd one out.

For the last year, I’ve also been put on blood thinners, and statins – previously only taking Blood Pressure meds for several years.

Toward the end of 2019, I had a review consultation with my chosen specialist to discuss my meds as the GP didn’t feel qualified to answer my questions.

During this consultation, I had a lovely conversation with his assistant and she brought it home to me, how much my quality of life had deteriorated. She felt that I was a perfect candidate for ablation success as I was pretty fit, not over weight, no drinking or smoking and I seemed more like a 45 year old in my appearance – how could I refuse.

Moving on, I had my ablation in December 2019!

Everything I had read online, and NHS literature seemed to indicate that recovery was not a big deal, and any episodes of AF would be short and by 3 months all would be good!!!!

All I can say is from the tee off, and for the best part of 3 and half months, MY EXPERIENCE has been a living nightmare, and horrid symptoms suggested ablation failure!

This is difficult but I will keep my post procedure monthly experiences as brief as possible.

First Month:

After 4 hour procedure that apparently went according to plan - sick on the ward, groin wound opened up and I went into AF for 3 days, so instead of being discharged, I was kept in hospital for 3 days. First 3 weeks, I’m in AF more then NSR. Long horrendously debilitating episodes, and discomfort every night (chest pain / breathing discomfort).

10 days in - Symptoms are so disturbing for me and my family that I went to A&E and was kept in for monitoring for 2 days. I couldn’t stand being in hospital (too much noise etc) so I discharged myself and struggled to make it from the ward to the lifts, almost fainting every couple of steps. Flecainide doses adjusted but not helping. Long periods of nearly blacking out due to 6 to 7 second interval (pauses) in pulse and low blood pressure during episodes – extremely scary time for me!

Second Month:

Noticeable improvement in ongoing symptoms, and feeling a little bit more alive! Lots of short bursts of AF, and most long episodes taking place at night (at rest).

As well as feeling the usual horrid symptoms of AF, I made use of my Iwatch ECG and AF capability to confirm these bouts of AF.

Third Month:

Another noticeable improvement, but same daily short bursts of AF. Longer episodes, mainly at night, lasting for upto 10 hours once a week.

Fourth Month:

Appointment with my Surgeon to discuss 3 months of recovery.

Outcome – shouldn’t be having long episodes at this stage, and reconnections have probably taken place in the Pulmonary Veins so booked in for a second ablation - noted as urgent. Whilst waiting for a hospital date, virus disruption has kicked in, and assume no new dates are being made!

Only 2 shorter episodes lasting no more then 3 hours during this month, and feeling generally much better in myself.

Fifth Month:

No episodes for first 2 weeks, total 3 weeks free if including last week in 4th month. A few ectopics here and there as usual, but nothing serious.

16th April (today): so no long episodes (>3hours) for 6 weeks, and free for the last 3 weeks! Wondering whether a minor miracle has taken place, and should I postpone a second ablation when the date comes through? Obviously the virus situation has bought me this extra time to consider, and we don’t know how long it will be before the NHS returns to normal.

To conclude – I wouldn’t wish that first month on my worst enemy. I honestly felt like my time had come! I’m assuming that my severe (I guess inflammatory) reaction to this procedure was unusual, and most people have a far more easy time. Since having this procedure, I noted that during first ablations (pulmonary vein isolation) around 70 odd burns are applied within the pulmonary areas. Pretty serious stuff so I’m not sure why these procedures are played down as pretty mundane, with little risk for the patient!

Please feel free to query / comment, but nothing too technical please as I’m no expert.

All the best and stay safe

Chris.

[BobD Volunteer]

Chris I don't think your reaction was at all unusual. Everything is covered in our fact sheet on recovery but sadly medics do not always understand how difficult it can be and how long it takes. That is why we patients got together and wrote the sheet. Six months is minimum for many of us and as we say many people are still improving at nine months or a year.

[Tennisking in reply to BobD]

Thanks Bob, really appreciate your thoughts mate.

[pottypete1 in reply to BobD]

As you know BobD the improvement for me after my last ablation continues even now nearly 2 years on. I am not imagining it either. Apart from my Bradycardia my QOL is now in a different league.

Pete

[Hidden in reply to pottypete1]

I would probably agree with that, 3 years on I am thankfully still in NSR but I have had runs of SVT and ectopics, bigeminy, trigeminy etc in the last 3 years. But they do still seem to be reducing

[Tennisking in reply to Hidden]

Excellent Mikee69, good to hear that a better QOL continues👍

[cuore in reply to pottypete1]

I believe you are taking an anti-arrhythmic drug, and if I remember correctly it is Flecainide. Could this drug be contributing to your Bradycardia. I am taking Propafenone which does have some beta blocker elements. In my case, it's keeping my rate in Bradycardia by 15 to 20 points. I had stopped it for 6 days before I went into AF , so I'm back on it which is how I found out. The drug took four hours before rate went into the normal range.

[Tennisking in reply to cuore]

Hi Cuore, actually I’m not taking any rythm or rate drugs, and yes when I did take them, I think they only made things worse for me!

[pottypete1 in reply to Tennisking]

I think cuore was responding to my post.

Pete

[Tennisking in reply to pottypete1]

😉 yes I did work that out - eventually🥴🙏

[pottypete1 in reply to cuore]

Hello cuore

Yes I am taking 100mg Flecainide twice a day. I have been for the past 30 years. I had my last ablation in 2018 and was told to keep taking the Flecainide. Unlike some I had no problem with that and gradually my incidence of AF have abated an it is now over 6 months since my last episode.

Because I am stable and in discussion with both my EP and GP I am staying on the Flecainide as for so many years my condition could not be controlled in any way. This course of action now is really based on the addage "if it ain't broke don't fix it"

My Bradycardia is troublesome at times with my heart rate being circa 42 - 45 most of the time. I also feel awful on waking in the morning.

I have been told that a pacemaker would be a good course of action to control it. However, I have made the very personal decision not to have one as I am fearful of my Acute Urticaria returning. I have been told that it is highly unlikely but of course I managed to find a number of cases of reaction to the implataion. It is very rare but so is my Urticaria in the way it manifests itself. I do not want to take the risk as I was in the most awful state when I had Urticaria after being on various heart monitors for hours and sometimes days.

I may have this problem but it is infinitely better than the regular bouts of AF I suffered for decades.

Pete

[cuore in reply to pottypete1]

Thank you for your detailed reply. Like you, I am beginning to accept that I will probably be on an anti-arrhythmic drug for the rest of my life. I see that you are on 100mg x2 Flecainide and not on a maintenance dose of 50 x 2. There is talk on this site that one needs to take a beta blocker with Flecainide to prevent atrial flutter. Has this been the case with you also?

There was no ablation for flutter in my first ablation and I was placed on Amiodarone.

After my second ablation for peri-mitral atrial flutter in the left atrium plus other stuff,I was kept on Amiodarone . Being on it too long and afraid my thyroid would get compromised plus other side effects, I did ask for a switch which became 100 x 2 Flecainide. I queried about flutter. The answer was not at that dose, so no beta blocker was added. I did ask to go on a maintenance dose of 50 x 2 mg. Flecainide.

But I did get flutter in the right atrium this time and had cavo-tricuspid flutter ablation for my third ablation. plu some reconnection. So now I have had flutter ablation in both atria.

So, I guess my question is has there been a concern about flutter in taking Flecainide, and more importantly has any flutter returned once ablated in your seven ablation journey? Are any of these meds lowering your heart rate into the Bradycardia range as I feel my Propafenone is?

Wow! It took you a full year after your last ablation to get you to the point that you are now AF free for six months. Good for you that you are such a fighter.

[Hidden]

Wow what a crazy, horrible experience. Ive not had an ablation as Ive not had a fib in 2 yr but if it returned with a vengeance, I would do it. I think it is good for people to know the good bad and ugly that can happen with any procedures. Hoping your life continues to get better and better💜

[Tennisking in reply to Hidden]

Many thanks Hoski! x

[bantam12]

Your experience just confirms to me I was right to refuse the ablation I was booked in for !! my cardios opinion of ablation is that it's a pretty drastic procedure and often unsuccessful so that was enough for me to go for a pacemaker and meds instead.

[Tennisking in reply to bantam12]

Good luck with the pacemaker and meds👍. My surgeon eventually took me off Flecainide as it appeared to make things worse for me, particularly in the first month so I don’t take any rythm or rate control meds. Pacemaker was mentioned in my last meeting with him to try and control the problems. We opted for a 2nd ablation, but not sure where things are going now. Guess a lot depends on how long I stay in a better place, and whether I have long episodes again and at what frequency!

[bantam12 in reply to Tennisking]

I had my pacemaker put in 2 months ago and although the procedure was fairly brutal it's been a success, I take Bisoprolol to control the PAF and the pacemaker stops the bradycardia and pauses 👍

Good luck with your 2nd ablation but if a pacemaker is needed then go for it, one procedure and job done.

[Tennisking in reply to bantam12]

Thanks. Glad it’s been a successful choice for you 👍

[Cookie24 in reply to Tennisking]

Flecainide made thongs worse for me and I did much better taking Propafenone.

[Tennisking in reply to Cookie24]

That’s good, glad you found something that works better for you. Flec never did the job for me, I think it made things worse. I did try using it as a PIP for about a year prior to ablation, and it used to get me back in NSR within 5 hours, but what a horrible ride the 5 hours would be!!!

[cuore in reply to Cookie24]

I have been on Propafenone for 11 months. I did stop it briefly for 6 days about two weeks ago but my AF came back. How long have you been on Propafenone?

[Cookie24 in reply to cuore]

I took Propafenone for the three months after cryoablation. I had been taking Flecainide prior to ablation. MY EP had me continue Flecainide for about a week after cryoablation but switched to Propafenone as I was still getting afib. I told him I didn't think the Flec ever worked for me. He said well they are in the same class. Anyway, propafenone worked. I am taking propafenone once again after my radiofrequency ablation for atypical flutter which developed 14 months after the cryoablation. I am due to come off propafenone.

[Jalia]

Chris, that sounds like a pretty awful experience and I wouldn't call it usual but Bob is the expert !

I've had 3 ablations and listed for a 4th but never experienced anything remotely like you have described.

Let's hope that things settle for you now, at least for a good while.

Best wishes

J

[Tennisking in reply to Jalia]

Thanks Jalia, very kind of you! I was told that I definitely belong to a minority who experience extreme reactions to the procedure, but sort of relieved to hear that it was nothing unusual from Bob🤔.

All the best with your 4th - when the world settles down. 🙏

[jeanjeannie50]

I felt dreadful, just like you, after my first and second ablations, was sick too. I even wrote on here asking whether ablations worked. I was quite cross.

Then I had my third one and immediately felt better, despite having an episode of fast AF before and another weeks later after leaving hospital. I also had a cardioversion around 6 weeks later. I think there are different levels of AF, mine totally debilitated me and an attack would lay me low for days. I feel for you, but give it time things will hopefully get better.

What I believe has helped me, more than any ablation, is changing my diet to a more plant based and additive free one. Though you really have to bear in mind that you can't do it half-heartedly.

Wishing you well.

Jean

[Tennisking in reply to jeanjeannie50]

Great that the 3rd worked for you Jean. You’ve been through a lot. I’ve been absolutely convinced that my bad reactions, and the sheer amount of AF I had for over 3 months amounted to failure. Just hoping that I somehow continue to improve, and don’t have to go through another ablation.

Take care x

[jeanjeannie50 in reply to Tennisking]

I've sent you a private message.

Jean

[CDreamer]

My experiences pretty much mirrored yours so I agree, not that unusual. After 1 st ablation I ended up in Acute Coronary Care & then I had the 2nd ablation - which stopped AF for 3 years but unfortunately exacerbated an underlying auto-immune condition - probably an inflammatory response.

[pottypete1]

It is good news for you to have improved so much after the significant difficulties you experienced in the early days.

I must however point out that the vast majority of ablations improve quality of life for AF sufferers.

Yes I do realise that some do have some bad days and weeks after the procedure but severe problems are by no means certain.

I know that some do have to have more than one procedure too l should know I have had 7 ablations.

Like you I have been the exception rather than the rule. Whilst I was not lucky enough to only need one or two ablations, I would do it all again as I had PAF for nearly 30 years prior to the last one 2 years ago.

My QOL is so much better now.

Pete

[Tennisking in reply to pottypete1]

Wow 7 ablations 👏👏👏. All the best Pete

[FancyPants54]

What a frightening story. Goodness me. The NHS seems keen to do initial procedures but quite poor on follow-up.

[pottypete1 in reply to FancyPants54]

Not true of every NHS Hospital.

I cannot fault the care and follow up communication that I receive from my EP he has the most accomplished communication skills and also the most accomplished skills.

Pete

[FancyPants54 in reply to pottypete1]

That's great. But I've been under a cardiologist for 7 years and no one has ever mentioned an EP, or a treatment plan or anything. I'm just lucky that I've been relatively well with PAF. Then I got stuck in it for 11 months until a cardioversion in Feb. No follow up until June for that. All they did was tell me to stop taking T3 for hypothyroidism and therefore removed the one little glimmer that was making me feel a bit better at last. They understand nothing about T3.

Anyway, I'm doing OK without them at the moment. But it makes me smile when I see people talking about how important it is to see an EP and talking about "their consultant". That's not the world I seem to be living in.

[pottypete1 in reply to FancyPants54]

You are right that there is insufficient follow up communication. I think that communication is the key yet they often fail miserably.

I know I have been lucky but also unlucky as I have had PAF for 30 years and have experienced all the trauma of living with it and with having had so many ablations.

I know it is a post code lottery and this is why life is so unfair and I really do count myself as fortunate. I also think that some of the less equiped hospitals should not be doing ablations and that centres of excellence are the way to go. It is difficult though because of the travel issues that result.

For what it is worth I do understand how traumatic some of the consequences are.

I had 7 ablations one of which I was awake for all the time as the sedation did not work it lasted nearly 6 hours. I experienced all the discomfort including 3 cardioversions during the procedure. They then took the view that I should have GA and that was what happened for the remaining procedures.

I had acute Urticaria as a consequence of being wired up for so long and spent 5 months climbing the wall with rashes. I came very close to losing the will to live and will leave what I mean by that to your imagination. This problem happened on 4 of the occasions I had an ablation.

I have issues with going for a pee when wired up in hospital and therefore on more than one occasion I had to have a urinarly catheter inserted which resulted on every occasion with a urinary tract infection.

I think the reason I do try to put a positive take on this subject is I do not want readers of this forum to think an ablation is always doom and gloom and something to be worried about. Statistically the prodedure is straight forward and successful in improving quality of life in more cases that those in which it doesn't. Nothing in life is equal or fair and every day we face the lottery of life.

As far as your comment regarding seeing an EP is concerned I would ask the question and do a lot of research as in all Trusts there will be a specialist department with all the correct equipment and skilled practitioners.

I really hope you and Tennisking continue to get better.

Take care

Pete

[Tennisking in reply to pottypete1]

Pete thanks for sharing and for your good wishes🙏. Well done for surviving 7, and the horrible complications.

[cuore in reply to FancyPants54]

If I am reading your post correctly you were persistent for 11 months, and then you had a cardioversion. That would be a long time to be persistent. Are you back in AF?

Some cardiologists like to hoard their patients and not send them to an EP. I had to insist to be sent to one. My friend has been allowed to slip into permanent and she still has not seen an EP. When she was in persistent AF, she did ask to be sent to one, but the cardiologist's answer was that it was too early yet. It's such a shame what has happened to her.

[FancyPants54 in reply to cuore]

Yes, I was in persistent AF for 11 months. On Digoxin and Bisoprolol and Apixaban. I'm still in NSR since the cardioversion and no longer take Digoxin (told to stop after the procedure). I've had no follow-up. My appointment for that is in June and I don't want to go, considering what's going on. For a long time my heart was very easily upset and would run faster or add some extra beats for a short time. But it has settled more now.

I am stuck with a resting heart rate that's often in the 90's though. It used to be in the 70's. I have the added complication of being hypothyroid and unresponsive to Levothyroxine. I recently had a gene test done and have a faulty gene that stops conversation of T4 to T3 and this is why my free T3 vital thyroid hormone is always so low regardless of how much replacement Levothyroxine I take. I need to take T3. Most heart people freak out about that. They say too much T3 causes AF and they won't learn further. I'm pretty convinced that too little T3 can also cause AF and that's the position I was in.

[cuore in reply to FancyPants54]

Your case is fodder for thought. First you must be young. You were one month short of being considered long-standing AF which, at that stage, you would have had seven rotar areas needing to be ablated beyond the pulmonary veins. You would have required two or more ablations to get corrected. Plus, a cardioversion would have a short time period to keep you in sinus rhythm. Yet it has been maintained for two months now. Ordinarily that usually is not the case.

I was only six months persistent yet I have had to have three ablations so far, plus I was one of the most complicated cases at the six month stage.

Although I am not an MD, I agree with you heartedly that your AF is connected to your thyroid issue. Good for you that you took matters into your own hands and had a gene test done. You appear to be the exception rather than the rule. Thus, you would need an exceptional cardiologist to really understand the complication and not a rote run -of -the mill cardiologist. I guess what I am saying is that your seven year cardiologist needs another cardiologist to verify an accurate diagnosis, and more importantly a proper prognosis.

[Tennisking in reply to FancyPants54]

Yes FancyPants54. It was truly horrible, and I’m pretty accustomed to injuries and discomfort pretty much the whole of my life. I only have positive things to say about the NHS and the surgeons I have met, but I do feel that the aftercare for this procedure was pretty much non existent. I struggled to make contact and chat with nurses who could give the necessary reassurance, and had to really push to communicate with my surgeon (great guy).

I can only imagine that they don’t have the necessary resources in place for aftercare so should they be performing so many ablations!!

[Padayn01]

that's first month reading it made me feel horrible, how it felt for you must have been absoultley horrible, to come out of the other end of that horrid first month deserves a salute to you, i'm also waiting on more tests for a possible 2nd ablation and just like you my 7 day holter monitor appointment got cancelled due to the outbreak, that first month i bet you were thinking what a big mistake going through this ablation but what are your thoughts now do you regret having it?

[Tennisking in reply to Padayn01]

Yes Padayn01, it felt like the biggest mistake of my life! I couldn’t even stroll 50 metres. My heart was all over the place.

I think if I hadn’t tried the ablation, I would have always wondered whether I perhaps missed out on an opportunity to have a better QOL. So at this stage, no regrets!

The last 4 ish years, I have changed my life. It’s far less manic and I’ve even tried yoga 3 times a week, but the episodes would still come😢. I think a radical change in diet to organic etc etc would definitely help AF sufferers but it’s a massive commitment and very expensive. I’m trying to eat more healthily but I’ve never been bad in that department.

[Gain]

Sounds absolutely appalling! I simply could not have coped. I wish you well on your road to recovery. Take care and thanks for sharing your story.

[Tennisking in reply to Gain]

No problem - Thanks Gain 🙏