10 weeks (tomorrow) post RF ablation.

[Sean_C]

Hi all, thought I'd drop a note giving my feedback and conclusions. Hope it helps anyone making the decision.

After 4 years of persistent AF and 4 cardioversions - I hated the idea of an ablation and refused to have one, believing that the cardioversions were good enough - the NSR after the 4th one lasting only 24hrs, I decided to go ahead with the ablation.

I had it done privately at St Anthony's in London on the 25th Nov by EP Mark Gallagher.

Observations..

The night before I was so nervous that I couldn't sleep and at 3am was planning on cancelling. The Imp of the Mind was conjuring up all kinds of horrible scenarios and trying to convince me that AF is not so bad etc.

My nerves got steadily worse at the hospital (no-one was allowed to accompany me) and walking down to theatre I felt like a condemned man going to the gallows. The nurse walking with me noticed, and even commented that I was in good hands and would be fine.

Walking into the actual theatre was so intimidating with all the screens and machinery and at least 7 people bustling around. However they were so relaxed and competent and kept up a steady stream of chat and some banter with me, and I was way too distracted to panic.

I had general anaesthetic and in no time at all I was 'lights out', waking in my ward several hours later (I was on the table for a little under 4hrs).

The next 6-8hrs or so was exactly as per the Booklet available here, but in the middle of the night I started getting pain in my chest, it hurt to move and breathe deeply. This turned out to be an inflamed pericardium, which is fairly common in a small percentage of cases. Some strong painkillers helped and within 24hrs or so it has eased and then went away within two days.

The next month I was washed out and lacked energy and felt out of sorts, took it easy for the first week (I was on sick leave) and then started working from home in the second week (I work on a computer, so hardly taxing).

by the beginning of January my energy started coming back and I have steadily improved in that regard. I have started cycling again, only indoors so far, where I can manage my effort more easily. I have now had two 75mile weeks, still keeping my average HR in the 120's and rarely going up as far as 140. I will steadily increase this over the next few months, but have changed my previously mega competitive attitude and will not be doing any more 166average HR and 188 max rides anymore.

In the last week I have felt really good and strong, energy levels rising and enjoying the increased oxygen from the NSR. I've started phasing in the weight lifting again.

I still get short runs of fast HR but it rarely lasts more than 10 seconds and a few deep breaths gets it back to normal. I also still get the odd ectopic (I think) feeling a thump etc.. this is often together with me slumping on the couch or after eating a large meal,. Both of these seem to affect it so I'm trying to be much more aware of my meal size and posture.

Finally, if you'd asked me in the first month whether it was worth it I'd have been 50:50 to say yes or no, depending on how I was feeling. Now though I am convinced it was the right thing and am hoping that I am one of the fortunate folks who only need the one.

Hope this is of interest. I wanted to return the favour to you kind folks on this forum who have responded so helpfully and reassuringly to me in the past.

I'm happy to answer any questions so will regularly pop in to see any comments.

All the best!

Sean

[Teresa156]

Hi Sean,

I’m so pleased for you 😊 it was really good reading your post. You have been through a lot and came out the other side 😊 I’m trying to get put forward for an ablation so it’s early days for me. I’m paroxysmal ( at the moment) and currently on Bisop only. Thus is the second time round on bisop , first time I tapered off it, I went straight into Afib 😳) bisop controls it, but I don’t like the meds and the side effects and can’t see a future with this affliction as I get older. I’m 56 and don’t want to be like this. It’s as if I’m just waiting for it to get worse. As I get older I’ll need more drugs snd I don’t want that if I can help it.

You have given me hope 😊

Well done and I hope you keep improving.

Teresa

[Sean_C in reply to Teresa156]

Hi Teresa, thanks for your message. I’m holding thumbs for you too. When you say ‘bisop only’ are you not on an anticoagulant?

I’m 58 and am still on biso pro lol, but only 1.25mg.

All the best.

Sean

[Teresa156 in reply to Sean_C]

Hi Sean,

No, no anticoagulant….I did ask about it, but they said as I’m a CHADS 0 I only need to go on it once I’m 65? I’m hoping I never have to, to be honest. I know I’ll need it if I have an ablation, but hope ( if it’s successful) to come off it….that is the plan. I can only take warfarin, because of another med I’ve been taking for many years which interact with the non vitamin K ones. I am on bisop 1.6 ( 1.25 and a quarter 😊) i tapered off from 2.5. My HR still goes to 56/58 at rest, so I’m hoping I’ll get down to 1.25 in next couple of weeks. I don’t think I could go lower without risk of Afib, though I might try. I have done it before and been ok, but it was only about a week. Lowering the dose makes me feel a bit better though, not 100% but better than 2.5….there are very few BP, rate control/anti arrhythmia drugs I can take due to this other med, which I can see being a big problem, which is another reason for my wanting an ablation.

Teresa

[Sean_C in reply to Teresa156]

Hi Teresa, ok I guess your EP knows you and what's best for you, but I can tell you there are many on this forum, myself included, that would prefer to be on anti-coagulation, irrespective. My CHADS score is also 0 but I was put on Rivaroxaban right away (actually was on Warfarin for a month or two but they moved me over so as not to need INR tests). I also understand that they will not do a Cardioversion or Ablation on you if you have not been on an anticoagulant for a month prior.

I stress however that these are only the opinions of lay-people (albeit with a lot of knowledge and experience of this condition) and the medical professionals know best. Perhaps just double check?

All the best.

[Teresa156 in reply to Sean_C]

Hi Sean,Huge apologies, only just seen your reply. Thanks got coming back. I do wonder if I should be on the blood thinners, but as I’m paroxysmal perhaps that’s the reason? I’m in no rush as I can only take warfarin. I did ask about it as the cardiologist knew I wax worried about taking it, he said I don’t need it until I’m 65…so that worries me too.

All the non vitamin K anticoagulants interact with my other med 😞 I know I’d have to be on it a month beforehand but I’d have to do it.

I just don’t want to take it forever.

I’ll double check again though.

Thanks again,

Teresa

[Singwell in reply to Teresa156]

I totally empathise wuth your feeling about 'waiting for it to get worse'. I found its important to give them a clear signal about how AF is impacting on your life. Tell them you are unable to carry on with life normally. I explained it was interfering with my work (it was and still does but not so much post moderately successful ablation) - that usually gets you on the list.

[Teresa156 in reply to Singwell]

Thankyou so much, I will 😊 I am hopefully seeing the EP ( privately as it was quicker) to put ‘my case across’ in next couple of weeks. It’s impacting my life greatly and is all I think about sadly. Thankyou. I’m glad your was successful.

Teresa

[Singwell in reply to Teresa156]

It was like that for me too. And it meant I could accept outside contracts for the work I do. Especially if it was going to involve international travel. That of course all stopped and together with my husband we pivoted in the way we run our small business. Successfully as it happens. Since my partially successful ablation (I'm down for a top up) I feel better 60% of the time. Not just that I don't get AF but also better than before. Plus I don't think about it nearly as much. I still get short episodes every couple of months but inbetween I feel able to get on with and enjoy my life again. Definitely worth it.

[Teresa156 in reply to Singwell]

Hi Singwell,Going on holiday or even thinking about travelling abroad seems to be a no-no for me and the way I’m feeling, without an ablation, I just can’t do it anymore for fear of an attack that I can’t handle. The problem I have us that bisop is stopping attacks, but there is always ‘fear’ that I’ll have one out the blue. They do scare me, especially as it’s all I take for them.

It’s good you can live your life again and I really hope that can happen to me 😊

Thankyou,

Teresa

[Singwell in reply to Teresa156]

I'm sure it will. Bisoprolol didn't stop my episodes and nor does lowest dose of Flecainide. I had a lot of support from two friends whom I asked to buddy me by messenger during episodes. And my husband.

[Megams]

~Thank you Sean_C - finally having mine 8th Feb so envisaged every step you took walking into theatre.Will hold onto the long term plan in the belief that all will be well ~

Positivity is the key ~

[Sean_C in reply to Megams]

All the best Megams... holding thumbs for you. When the doubts hit, remember why you are doing this and focus on a positive outcome. You are not going to feel great for a few weeks and will have some wobbles and nervous times, so remember that between the people on this forum there are 100's of ablations with great outcomes and very few with bad ones... (anecdotally of course).You will be in great hands.

As you say - positivity is key!

Let us know how you are getting on when you get the opportunity.

[Megams in reply to Sean_C]

~Thank you so much Sean - had my Cardiac CT yesterday which went well. Will let you know & just taking one day @ a time & no doubt one hour @ a time when Tuesday arrives................

[Hidden]

I guess you know your body and your advisors but that sounds like a lot of exercise and exertion just s few weeks in. Good luck

[Sean_C in reply to Hidden]

Thanks for your reply and concern. That may sound like a lot but I was pretty fit going in and I exercising at a much lower capacity than previously and listening to my body. I'm limiting myself to an hour at a time and keeping my average HR in the 120's and actually feel great after a ride. My EP is also fine with me exercising ...Appreciate your comments.. Kind regards.

Sean

[Singwell]

This sounds great and a really good outcome! I'm hoping for a similar result from a top up due to moder success from mine last year under sedation. I love having the slightly higher HR - I don't feel the cold in the sake way and like you have more energy. Within the 12 weeks I wouldn't be chancing any weights if I were you but each of us is different I guess. BTW I too had the raging chest pains first night. Glad to know what that was as me and the hubby were in a hotel and it was a bit frightening.

[Sean_C in reply to Singwell]

Hey Singwell, thanks for replying... yes I can imagine how scary it must have been in a hotel room, what with being hyper aware of every skip and flutter etc.. and with that pain! I was fortunate that I was still in hospital and in fact they kept me in until after 7pm the following day and had a radiologist do an ultrasound to make sure there was no fluid build up etc.. Glad you are feeling better now and steadily improving.. all the best and long may that continue!

[Mugsy15]

Nice to share someone else's perspective Sean. I'm in for my ablation tomorrow. Feeling pretty calm - and as I suffered a very lumpy couple of hours of ectopics in bed last night, I'm in a good place regarding my decision to crack on and get it sorted.

[Sean_C in reply to Mugsy15]

Hey Mugsy, sounds like you're in a good place... awesome. I guess by the time you read this you'll be done already so I wish you the best and look forward to hearing about your successful procedure in the next few days,.

[Mugsy15]

No, tomorrow is still tomorrow! 🙂I'll post some feedback no doubt.

Cheers!

[Sean_C in reply to Mugsy15]

LOL yes i only realised after clicking send that your reply was this morning 🤦🏻‍♂️

[Mugsy15 in reply to Sean_C]

Well, it's done. I was in the Freeman at 7.30am, being checked in and shown to a bed on a ward, where I got straight into a gown and paper underwear; very fetching. I was told I was second on the list to go down.

At 9.40 I was asked to bring my pillow with me and follow a nurse to the theatre. It was all very businesslike and relaxed, and I felt slightly on edge of course, but pretty calm.

As the nurse warned, the room had a lot of equipment in and a few people buzzing about in scrubs, but I was prepared for that having read about it on this great forum, so was not intimidated at all.

They asked me to lie on the bed with the pillow under my head and set about hooking me up to a sedation cannula, BP cuff, ECG sticky pads, etc. They did so in a breezy, chatty way that helped me stay reasonably relaxed and less like a lamb to the slaughter!

The consultant appeared and in what seemed like no time had numbed up my groin and done what he needed to down there. There was a 'push' which he forewarned me about and was uncomfortable but was over in a few seconds. After that the sedation had kicked in and I felt happy enough as he went about his business while chatting about his band rehearsal the night before!

During the procedure there was a bit of movement and some 'hiccups' in my chest but nothing that bothered me.

In what felt like a short time but was, I think, about 40 minutes I was done and being wheeled back to my bed on the ward.

I felt a bit of general chest pain, which is to be expected, but a couple of biscuits and a Brufen tablet sorted that, and after 15 minutes of dozing I was fully awake chatting to some of the other guys on the ward with a coffee. I was asked to remain lying on my back which I normally wouldn't like, but the sedation made it feel comfortable to do so, and the pillow allowed me to see around me rather than staring at the ceiling.

I was told the procedure had gone very well, and after a sandwich, lots of coffee and biscuits and a good chinwag with the other blokes on the ward, I was in a taxi and away home for 4pm.

I felt great from the moment the chest pain receded and the sedation wore off and still do. In fact, after asking the taxi driver to wait while I got my wallet from the house to pay him, I ran up the stairs to get it! I got to the top before realising and chastising myself for being so silly - but that's how well I felt!

Sixtychick and Megams: you wouldn't be human if you didn't feel trepidation about having a medical procedure done, but please don't overthink this one into a day of torture and fear. It really is not and should I need a second one, as I know many do, I won't hesitate to repeat the experience. Please don't worry about sedation; imagine lying in a warm bath feeling very relaxed; it's that kind of feeling!

As I type this morning, I'm pleased I had it done and certainly don't feel 'wiped out'; the challenge now is to allow my heart to recover gently; not to overdo things because I feel so 'normal'!

[Sean_C in reply to Mugsy15]

Great news. All the best for your recovery.

[Mugsy15 in reply to Sean_C]

Thanks Sean; and I wish you the best with your AF journey.

[Sixtychick]

The cardiologist I saw a year ago, suggested an ablation. My PAF wasn’t too bad, up till end of last year, just had it 3 times, since the first episode in March 2014, but I had an epidode in November last year and 2 last month, which is extremely worrying. They’ve increased my Sotalol from 40mg to 60mg and I have an appointment with a cardiologist next month. I also have had P SVT for 40 odd years, which I’ve also had a few episodes of, recently, so I expect they’ll suggest ablation again. I am terrified of having it done, I ‘m not good at lying still or lying flat, I believe you have to do both, and also of it going wrong and ending up with a pacemaker. Also never had sedation, so worried about that too.How can I stop myself from worrying about the procedure.?

[Sean_C]

Hi Sixtychick. while some EP’s are happy with sedation, many - including mine - prefer to put you under general anaesthesia. I knew nothing until I woke up back in my hospital bed. I’m sure many of the others will respond too but while I didn’t feel great for a week or two I got better day by day and if it sorta out your arrhythmia etc. Then I think it’s worth it!

I’m sure you can explain your trepidation and ask for general?

Either way. You’ll be fine!

[Sixtychick]

Thanks. It’s a difficult decision to make.

[Davidv45runner]

Hi Sean

As a runner / swimmer etc like yourself your posts interest me greatly .

Do you know why you were not offered flecainide to start with? .

I’m guessing this had something to do the the echo scan results ?

Also , did your episodes never self convert back into sinus mode - Prior to becoming permanent ?

And did your episodes only occur during activities at high exertion ?

I ask this as my episodes ( ones I am aware of ) have always occurred during rest whilst lying down ( apart from maybe the last one yesterday ).

Finally , we’re you ever able to self convert ?

Initially ( before flecainide ) I found a low intensity cycle or slow run would self convert.

I was and always have been quite a statto so was forever looking at my HR even before Afib started .

Finally finally

Did you cut back exercise much after being initially diagnosed ?

Dave

[Sean_C in reply to Davidv45runner]

Hi Dave, happy to give as much info as I can. So here we go, in order of your questions.I am a runner and cyclist mainly, stopped swimming years ago as time is shorter these days. I haven't run since a few weeks before the ablation (so 3 or so months now), mainly because I want to keep tight control of my HR and running is more taxing than cycling so pushes the HR up faster. I'm currently riding indoors (Zwift on a TacX Neo). (Strava account - strava.com/athletes/9692347).

I never had PAF attacks (that I know of) and by the time I knew I had AF I was already in Persistent. I ran the Birmingham Half Marathon (Oct 2016 I think) and just couldn't recover. My runs in the next few weeks were awful and I didn't know why. Diagnosed with AF in Feb 2017). Flecanide was never offered... just Bisprolol, Ramipril and Rivaroxaban.

I was in AF no matter what I did, so I just kept on training (with the blessing of the doc) albeit at lower speeds as I ran out of steam quickly, particularly on uphills. Pre AF I could run at 5min/km, afterwards 6-6.30 min/km.

Never self converted no matter what I tried. Once in AF I was IN, until a cardioversion (I've had 4).

I refused point blank to deliberately cut back when in AF, though this was forced on me, usually after reverting back to AF. The process was... in AF, still training but struggling at slower speeds. I still ran, cycled and lifted weights. Have a cardioversion, and feel like the million dollar man. Slowly (possibly not slowly enough) get back up to full pace (for me, I'm 58 now) and thoroughly enjoy myself. Then, for no discernible reason, I'm back in AF. Get fed up.. eat and drink too much and exercise too little, pick up a few pounds in my misery. Then after a month or two pull myself together and get back after it.

I've always used a HR monitor too and the highest number I've seen was in a sprint for the line in a cycling race (in the 00's so I was late 30's early 40's probably), I looked down at my Polar and it read 207... these efforts over the years probably contributed to the AF now.

Hope that helps.

All the best.

Sean