13 weeks post ablation

[Hammerboy]

Hi all, hope you're all staying safe. Just thought I'd update you on my journey so far. I had my 12 week review by telephone with my EP last week. I had a rough start in the early stages but things calmed down after about a month. In the last 4 weeks prior to my review I had one 8 hour AF episode that was relatively mild so discussed the next steps with him and was told he would review me again in 9 months time and I'd be sent an event recorder to moniter any episodes. I asked if the blanking period was now over and that if I had another bout he would consider the procedure a failure. He said for a number of different reasons he would say yes and at the next review he would be recommending another ablation if I did , this time under GA. Last night while relaxing I went into AF which self resolved after 4 hours. My symptoms thankfully are pretty mild but I do feel weak and my HR although irregular is quite low. I feel disappointed but not downhearted and thanks to the information I gleen from the lovely folk on this site I live in hope things will get better. The biggest change I've really had to come to terms with is that my general fitness post ablation is far weaker than before I had it. I'm self isolating with my family at the moment and trying to stay as active as possible in these frightening times. My thoughts, are with all those not so lucky and hoping this dreadful disease will eventually be controlled. Stay well everyone

[Hidden]

Try not to get too downhearted, it is still early days. To put that into context, I had my second ablation in 2018 and all was well for around 7 months. I then started to get frequent bouts of rapid, but regular heart rate. Eventually, I had around 7 episodes of AF all captured on my Kardia. At my review in November 2019 it was agreed that I should have a 3rd ablation later this year. However, I have not had an episode since 12 December 2019, but given the current situation, I am not expecting a call anytime soon, and if my current situation continues, it might go on hold anyway.

Of course we are all different, but for some, it can take a year for things to settle.

[Hammerboy in reply to Hidden]

Thanks for that, I'll stay positive 👍

[BobD Volunteer]

If you read our fact shet on recoverym writen by patients for patients you will see that we saay that it can take three to six months for full recovery and many people are still oimproving at nione momths. EPs may know how to ablate but we have the advantage of knowing about recovery. Itall slounds qquite normal to me.

heartrhythmalliance.org/res...

[Hammerboy in reply to BobD]

Thanks Bob I know it's a long road so won't get too despondent. Can I ask a quick question regarding medication. I used to take 1.25mg of Bisoprolol as a PIP during episodes as a sort of assistance drug pre the ablation. Since the procedure I've been advised to take it daily by my GP. It makes me feel very tired and my HR which is normally on the low side anyway is around the mid 40's now. I'm not asking for you to advise me medically but are there any cases where taking this drug is problematic and coming off it causes issues even in such a low doses as mine ?

[BobD Volunteer in reply to Hammerboy]

I have never taken bisoprolol so can't really comment but I do know many EPs like patients' hearts to be kept calm for some time after ablation to allow healing in peace. Personally I would ask EP rather than trust GP who is not an expert. If I go to mine she asks me how I want her to treat me! Do be careful about stopping as I have heard tales of cold turkey problems. Try taking it at night as many do to limit day time symptoms.

[Hammerboy in reply to BobD]

Thanks Bob, difficult at the moment as these guys, are so busy I dont want to take up their time. Before the GP suggested it I'd not taken it 6 weeks post ablation and in between episodes I felt fine so it's kind of catch 22 now. I'll ride it out till things improve for those working so hard at the moment 👍

[Hidden in reply to Hammerboy]

Hi, I had a difficult time coming off bisoprolol and had to have two attempts before I was successful. even half a 1.25 mg tablet gave me side effects but stopping gave me terrible palpitations, headaches, brain fog etc etc.

If you do stop taking it, take it easy

[Hammerboy in reply to Hidden]

Wow I thought a low dose had very little effect. I remember talking to my cardiologist two years ago after my first consultation a month after being diagnosed with PAF and recall him saying any side effects would be minimal as it was such a low dose so using it as a pill in the pocket would at most reduce symptoms during an episode. I was first prescribed them in hospital after the ECG confirmed AF and was given no information other than take one a day.

[Hidden in reply to Hammerboy]

To the general population that amount would probably have little effect. But I think some of us are more susceptible to it

[Hammerboy in reply to Hidden]

That's a fair point

[irene75359 in reply to Hidden]

Me too. I stopped 1.25mg Bisoprolol (my GP said it was a miniscule dose) and am going to post my experience of withdrawal soon.

[dmack4646 in reply to irene75359]

Had terrible side effects fir me too takes ages to go out of your system

[Shcldavies]

My EP told me I would I would be back to normal in a week. When I was feeling worst after a week (had one episode where I collapsed after a shower), I thought the ablation did not work and was dispondant and holding on to the hope that the people on this site and the fact sheet was right. Thankfully that turned out to be the case. EP suggested medication post ablation (he told me to self prescribe up to a point) turned out to be too much, started on Bisoprolol and Digoxin, HR very low (in 40s overnight) GP said to stop all Meds and felt good for weeks but self monitored after around 10 weeks went back on 1.25 Bisoprolol as HR and BP started to increase, Cardiologist review confirmed to continue with Bisoprolol. Ectopics and sort runs of arrhythmia (seconds only) continued but were less intense and frequent. During this time went on health food drive (not too severe), drinking water and ensuring iron and electrolyte levels were good, doing very little and only very slowly increasing activity. It was around the 6 months point that I believed I was getting there. At 9 months started work again (had retired) and I believe I am still improving over a year later.

Docs know best but dont know everything, I was given some leeway to self prescribe by the EP but did nothing before getting GP advise (my GP seemed to know more about the recovery than the EP or Cardiologist). Tell the Docs what your conditions like and don't do anything they don't agree with (meds can be far too complicated for us to know better). My EP was very good and did wonderful job with the ablation but he had little knowledge of my recovery (similar the Cardiologist).

Many take time to adjust to bisoprolol even low dose and it can make you feel lethargic but many get used to it and start to feel fine after time, getting the dose right can be trial and error.

I believe that most if not everyone gets ectopics and runs of arrhythmia but do not notice as the heart copes with it without letting you know. When your heart is irritated it does not cope so well and it lets you know about it. In my case my heart works like a Rolex for well over 99% of the time but does do strange things which I can pick up once or twice most days. I believe my heart did this before but I just did not notice it.

You may well be very different to me but I suggest we just do not know, there are so many who went through similar recoveries to me that I suggest there is a chance that you may well find further improvement as the months of recovery roll by.

[Hammerboy in reply to Shcldavies]

Thank you that's so reassuring, I've noticed that over the last 2 years I am so switched on to the most minor changes in my heart rate that I can almost predict when it's going to kick off. As I read this sitting up in bed with a cuppa I felt a cold flush, felt my pulse which had become irregular. 10 seconds later back to normal. 2 minutes later that feeling again and irregular. As I finish typing this it's normal and I can feel the difference. As you say this may be happening multiple times when I'm active and busy so don't notice it but in my case pretty much all my episodes are during relaxation when I'm much more tuned in to noticing it. Before the ablation I could hike in the Lake District for miles with no ill effects for a week then come back home and back to normality and AF would start whilst watching the TV. It was so random it became really irritating which I'm sure most of us experience. I'll keep on the Bisoprolol for now and just hope my body adjusts and I can walk to the end of the garden without feeling like I've just finished a route march.

Stay well

[Shcldavies]

Its a long journey for most of us, stick with it and it will come right in the end. One thing worth looking at is your low HR, my ectopics are far more prevalent when my HR is in the 50s at rest (normally in the 60s). Getting the balance right between keeping your heart calm and keeping your HR above 60 can be tricky. Bisoprolol does work for me though it does keep my HR on the low side, perhaps talking to your Doc to see if a lower dose would be a better balance would help.

[Hammerboy in reply to Shcldavies]

Agreed on the low HR except the lower it is the calmer the heart is what I'm being told. Isn't 1.25mg the lowest dose available with the least effect ?

[Shcldavies]

The lower the HR the calmer the heart - yes to a point. If you have watched the York Cardiologist Dr Gupta videos on youtube (if you haven't do watch them), in one of them he talks about ectopics and how they start if your HR is too low for your body, basically your heart has back up mechanisms and when they do not sense your heart being triggered as it should, foci in your atria initiate the beat and these can be felt as ectopics. In some there can be many foci coming to life and causing short arrhythmia spells. When your SA node starts to work properly again the foci should stop firing. Occasionally in some the foci don't stop and start a prolonged arrhythmia which in turn could initiate AF or Afib or other arrhythmia).

I am not sure about the lowest Bisoprolol dose, I thought it was 1.25 also but I have read posts on here of people taking 0.75 (don't know if they cut the pill in half). That said 1.25 is low and worth persevering for a few months to see how the body reacts.

[Hammerboy in reply to Shcldavies]

Thanks for that, such a shame so much of that helpful information isn't shared by the medical profession to people living with AF and those of us thinking of having or having had procedures. Thank God for forums like this