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Cyclist and Runner with Persistent AF - After much deliberation decided to have an ablation

FindingCaradoc profile image
24 Replies

Thanks again to everyone who replied and commented on my post from a month ago, which I found most helpful. I thought you might be interested in an update. As I mentioned previously, I was minded to seek some further professional opinions (and others in the forum when I posted a month ago also encouraged this) as ultimately although the recommendation of my original EP Cardiologist to not get fixated on ‘chasing sinus rhythm’ had much merit in my circumstances, given my well controlled persistent AF with tolerable symptoms, it just didn’t feel right to me, feeling (at 62) to be relatively young to end up with permanent AF, particularly as with the effect it would have on my active lifestyle.

At a further recent (since my last post) consultation with my original EP we discussed again my options, including the pros and cons of an ablation, as he was willing to do one if I decided to proceed down this route. His preference being for a radio frequency procedure under sedation and of course sooner rather than later while I was still in relatively early persistent AF.

After further consideration I decided to get two additional professional opinions in early September. I am fortunate to have the means of doing so (one of these BUPA paid for as a second opinion and the other I self-funded). The first was from a London EP working out of St Barts, who was more positive about ablation in my situation, although he also agreed that leaving things as they were was a reasonable approach. I was offered a Cryo balloon procedure under general anaesthetic.

My final appointment was at Liverpool Heart and Chest Hospital with Professor Gupta, whose passion and enthusiasm for helping people with AF were immediately apparent. Like the London EP he was also more positive about an active approach in my circumstances, involving an ablation, and I was also delighted to discover that he was able to offer me a Pulsed Field (PF) Ablation, as apparently Liverpool, along with Royal Papworth is one of only two centres in the UK presently offering this relatively new approach to catheter ablation. I was already aware of the reported benefits of PF Ablation, including that it is believed to make what is already a relatively safe procedure even safer, so as I was already moving towards deciding to have an ablation this made up my mind for me, which made me feel better straight away having finally made a decision! Of course, a smaller part of me thinks I am still in guinea pig territory, but I also understand that pulsed field ablation has already been used many times in the UK since April this year and in Europe and America.

So I have recently had the pulsed field ablation under a general anaesthetic (I believe sedation is not appropriate with this type of ablation but that was fine with me!) and left the Cath Lab and Recovery in sinus rhythm (not quite NSR as I have always been Bradycardic going back as long as I can remember – genes and general fitness I believe – so it has not needed intervention). I spent a night in Hospital and was discharged the next day still in sinus rhythm, which as far as I am aware is still the case (I don’t have a Kardia mobile or similar and hesitate to get one as for me I think it might be counter-productive). So far, I have felt fine with only a few mild palpitations and very little chest discomfort. I am of course aware that it is early days, but hopefully things will continue in a similar fashion. I am also hopeful that I may not need a second ablation as apparently the chances of a first procedure success with PF Ablation can be higher than with other forms of catheter ablation, but of course only time will tell. I will provide further occasional updates for the forum as I suspect interest in PF Ablation will increase as it becomes more widely available.

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FindingCaradoc
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24 Replies
BobD profile image
BobDVolunteer

Dont forget to read our fact sheet on recovery and don't over do things. Otherwise a good call I think.

healthunlocked.com/redirect...

FindingCaradoc profile image
FindingCaradoc in reply toBobD

Thanks Bob - yes I downloaded it a while ago and have re-read recently 😊

MummyLuv profile image
MummyLuv

so delighted for you as you know! Pulsefield is such an exciting option and seems to be doing well with early stage persistent. Rest up and take care of yourself, stay in touch x

FindingCaradoc profile image
FindingCaradoc in reply toMummyLuv

Thanks again. Will do x

Gumbie_Cat profile image
Gumbie_Cat in reply toMummyLuv

Hope this might be another thing that extends up to Edinburgh some time!

Frances123 profile image
Frances123

Had both my ablations at Liverpool Heart and Chest Hospital under Dr Todd and can’t fault them. Was very interested to read they do Pulsed Field and will have to read upon that. Wishing you continuing recovery. x

FindingCaradoc profile image
FindingCaradoc in reply toFrances123

Thank you Frances, yes I was well looked after there

Bodydoctor12 profile image
Bodydoctor12

This is all good to know especially regarding the different types of ablations, so thank you for taking the time to update us here on the forum. I look forward to hearing more from you going forward . I am in a similar position as you and at 63 with early persistent AF have some decisions to make. I’ve recently had my first NHS investigation at St Barts and Im waiting for their suggestions, most of my increased rate symptoms are controlled by BISOPROLOL right now but I am aware that my rhythm is all over the place at times. Please keep us updated. I hope your NSR continues and please take things easy for a while.

FindingCaradoc profile image
FindingCaradoc in reply toBodydoctor12

Thank you. Not sure if you have read my first/original post, but Bisoprolol was the only directly relevant rate control drug I was on until recently (I am also on Apixaban and various other medications) and a small dose was enough for me since my NSTEMI in April, but I was fortunate that my persistent AF was readily controlled, although as I have mentioned not completely asymptomatic. Indeed one of the EPs that I saw described it as 'well organised'! Since my recent PF Ablation the Bisoprolol has been stopped, partly because my heart rate is always rather low anyway and presumably partly because the EP is confident with his work 🤞

Best of luck with getting yourself sorted. The London St Bart's based EP I saw came across really well and I know from reading other posts on this forum that the St Bart's EP team is well respected.

OzJames profile image
OzJames

Hi FC it sounds like a good way to go, what meds were you on and for how long. Are you continuing with some meds post ablation? I’m new here and finding my way around. Have had PAF about every 4 or 5 years this time Cardio says after 4 weeks on Meds I go in for Cardioversion so looking at all options

FindingCaradoc profile image
FindingCaradoc in reply toOzJames

Hi - I am certainly pleased with my decision at present, so hopefully that will last! 🤞 But it was finely balanced as my persistent AF was tolerable. I am still on most of the medication I have been on since my NSTEMI last April (so for two for blood pressure, an anti-coagulant and an anti-platelet - have a look at my first/original post from a month ago for more background if you wish). Since my PF Ablation the EP has stopped the Bisoprolol that I had been on since I came back to the UK in early May. A cardioversion did not work for me, but hopefully it will for you 🤞 best of luck.

OzJames profile image
OzJames in reply toFindingCaradoc

thanks for sharing, having read about Flecainide it concerns me as it appears that it can cause it’s own serious problems. Hopefully I can transition into PIP as well. After 29 years of PAF with maybe only 7 or 8 episodes during that time (that I’m aware of!) the inevitable would eventually confront me. Im lucky I’ve found this Forum and thank all for their contributions!

ozziebob profile image
ozziebob in reply toOzJames

hi James,

For no reason other than you are new to the Forum, and are an Australian, I want to recommend, for inspirational purposes, the efforts undertaken by a fellow Australian Steve Carr to successfully deal with his AF. His testimony is online ...

carrafibdietinfo.com/

Highly recommended !!!

Ozziebob (aka bob)

OzJames profile image
OzJames in reply toozziebob

thanks Bob I will look at in detail a lot to absorb, interesting though about Vitamin D my levels are within recommended levels now but have been much higher in the past, as I've got older maybe less time outdoors...Could explain why I've only got PAF 7 times or so over 29 years. I will have a good read when I return from walking my little Aussie Sheppard! many thanks for sharing mate

javo123j profile image
javo123j

Thanks for this posting. Although I have paroxysmal afib I asked for a referral to an EP and have now been referred to Liverpool heart and chest hospital. I'll see what they say and hopefully they can help me with the afib and I can get on with my running and cycling. Good luck

FindingCaradoc profile image
FindingCaradoc in reply tojavo123j

You may not have read my first/original post from a month ago, but I had paroxysmal AF for 17 years until last April (when it became persistent after an NSTEMI) and for the most part during that period it did not interfere with my lifestyle or physical activity. Indeed I took up fell running in 2015 and you can't get much more strenuous than that! 😃 Having said that after having Flecanide as pill in pocket (PIP) for 7 years I then ended up taking Flecanide every day from 2012 until my heart attack in April and although I tolerated it pretty well it did take the edge off my heart's performance I am sure.

Anyway, best of luck with your referral, from what I have read on various forums and from my own experience it looks like LHCH is one of the leading centres of EP expertise in the UK.

javo123j profile image
javo123j in reply toFindingCaradoc

Yes. I replied to you then as well. As you say the worry is that it will go permanent. I manage okay at the moment but when in afib I also have rapid ventricular response and cardiologist says heart is not up to taking flecainide, and it affects any exercise I do. If I could guarantee I would stay as I am now I would give the ablation a miss!

FindingCaradoc profile image
FindingCaradoc in reply tojavo123j

I should have re-read the previous post thread responses, memory declining as well!! You make a good point about the status quo, which of course is not a given, and was one of the factors for me in finally making a decision to have an ablation. Two of the EPs I consulted reckoned my well controlled persistent AF was unlikely to get significantly worse, the other one said it was quite possible. I should add I know nothing about the implications of rapid ventricular response.

If you’re worried about the small risks associated with RF or Cryo Ablation do look into PF Ablation if you haven’t already, although there are pros and cons here also (mostly pros as far as I can see as a lay person). You may be offered it (PF) if you’re going to LHCH, although if it’s an NHS referral I believe the need for an anaesthetist may be a factor in timescales. Hope you get sorted soon 🤞

javo123j profile image
javo123j in reply toFindingCaradoc

It means the heart doesn't pump the blood out properly and it makes exercise difficult but not impossible. I'll definitely ask about the chances of the PF ablation when I see them so thanks for the information.

FindingCaradoc profile image
FindingCaradoc in reply tojavo123j

👍

Keano99 profile image
Keano99

that’s great to here. It sounds like your recovery is off to a good start.👍

FindingCaradoc profile image
FindingCaradoc in reply toKeano99

Thanks 😀

dedeottie profile image
dedeottie

Brilliant news and interesting to hear about pulse field. Rest up now.

I had my second ablation in as many months recently and in NSR still, with a few odd blips but only lasting seconds and not AF or tachycardia 😀

I have been really careful with exercise but now built up to 2 2/3 mile dog walks a day with no hills. Yesterday did a bit more( nothing strenuous) and absolutely bushed today…. Lesson learned !

Keep us updated and good luck

FindingCaradoc profile image
FindingCaradoc in reply todedeottie

Thanks, yes I intend to, although I'm finding it hard already! I hope your good progress continues 🤞😊

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