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Devastated AF Back

MickN profile image
24 Replies

AF Back five weeks post ablation.

It woke me at 01.30 this morning and still not in NSR yet, that to me does not sound or feel like post ablation healing.

Absolutely devastated, could not of possibly done anymore for this to have worked, guess one of the unlucky ones, what happens now do I ride it out until my 12 week check with my EP, if this is continue have no ides what meds I should take, currently only taking 2.5mg Bisoprolol and 20mg RIvaoxaban.

Mentally shot this morning , means more time off work, only back two weeks, where will this all lead, gutted and emotionally mullered at this moment in time, really came out of nowhere.

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MickN profile image
MickN
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24 Replies
BobD profile image
BobDVolunteer

Sorry to hear that Mick but seriously it is still early days. Ring your arrhythmia nurse at the hospital where you were treated or if they don't have one speak to your EP's secretary and explain. I'm sure they can help . Not everybody has success on the first attempt and many need a top up later so don't panic. You are in the system and it does move forward.

Bob

wendicarro profile image
wendicarro

So sorry Mick,

I remember that happening so very well and understand how devastated it makes you feel, but Bob is right you are still in the healing stage and scar tissue needs to form around the ablation site before you notice any significant changes if I remember rightly.

You will get fed up with people saying that to you over the coming weeks but go with it and see how you go ,as for work I wouldn't worry too much they will understand if you explain, your health is more important.

Good luck

Wendi

meadfoot profile image
meadfoot

Sorry to hear this Mick. As Bob and Wendi say it is early days and I know that may seem cold comfort for you today but it is true. Get on the phone to your EP team as a priority and get their support. Please don't give up hope as disappointing as it seems at the minute. Dig in, make that call get advice and a way forward.

All will be well stay strong. Thinking of you.

Dee

MickN profile image
MickN

thanks all

Spoke with Arrhythmia nurse just now, all part of the healing process he reckons, certainly doesn't feel like it, told to ride it our for the 12 weeks and see where we are then.

This is one of the longest episodes I have had.

Jason1971 profile image
Jason1971 in reply to MickN

So sorry Mick. I really hope it passes and things then go according to plan. I'm four and half weeks post ablation and I was told by my EP to more or less expect the return of AF at some point, as my persistent AF was pretty bad. On the bright side he was confident we could get a prolonged period of no AF even if it took a couple of procedures. Keeps us posted Mick.

jennydog profile image
jennydog

This is exactly what happened to me. You go for weeks with no trouble and then it strikes again. My episodes post-ablation are much milder and a 7 day monitor did pick it up in the middle of the night on day 4.

I have 100 Flecainide to use as a pip and it works in about 30 mins. I also take 2.5 Bisoprolol at night, just to help my heart.

MickN profile image
MickN in reply to jennydog

unfortunatley Flecainide does not work for me, popped 100mg at about 3am and if anything it got worse, take the 2.5 Bisoprolol also at night.

this is my first episode in 6 weeks.

Thing is it just takes you back thought wise to where we were pre ablation.

Even if this episode stops no for a fact i will go to bed wondering when it will come on again, been sleeping so well the last few weeks as well.

all a little bit raw at the moment, probably need to be of stronger mind, but this AF has made me more of half empty glass miserable sod.

jennydog profile image
jennydog in reply to MickN

I understand exactly how you feel. I was devastated when it restarted after so many weeks when Ihadn't felt my heart once.

I am in a different position to you as I cannot be considered for a 2nd ablation - my way forward is pace and ablate because of fibrosis. I intend to cope by using the pip and I have only had about 6 mild episodes , now 8 months post-ablation.

It could well be that this recurrence is a one- off. The reality is that this is still early days for you. You need to make a reasoned assessment at the 6 month stage.

Hardjuice profile image
Hardjuice in reply to MickN

Just read your post mick

Hope you have picked up I'm seeing same EP I believe

MickN profile image
MickN in reply to Hardjuice

Stephen Murray at the Freeman

So are you waiting or already had an ablation

Hardjuice profile image
Hardjuice in reply to MickN

No I'm permanent AF

Just taking meds

And see Steve every six months

I struggle now and then but have to work

He doesn't think an ablation is a good option for me at present

Apart from swollen legs because of drugs

And feeling sick

And knackered now and then

I guess I'm symptom free

If I sleep on my left I get dizzy and feel rough

On my back not too bad

I sleep on my right best

I feel rough after a big meal or now and then when stressed

If I go in the gym and exercise hard

My.blood pressure drops

I need to get off diltiazem ASAP because my legs suffer after long days at work

Burning sensation and swollen

Goes back to normal after a night in bed

I'm a plumber so on my knees a lot and not getting younger 60 now

I believe my AF started after excess use of an inhaler for asthma

During a walk for a Royal Marines charity on the Pennines

But I try to switch off from AF

And just crack on so to speak

I have been offered a pace and ablate to get me off drugs

But it sounds very unnatural to me

There has to be a better way

Phillip the arythmia nurse is a good help I ring him about my issues now and then

I'm seeing Dr murray April 8 th

You have my number

Munsterman profile image
Munsterman

I had my ablation around the same time (Valentines Day) and have had numerous episodes mostly at night. I was told to expect things not to settle down for a couple of months.

Have a follow up consultation and ECG tomorrow so will be interested in what they say.

Barb1 profile image
Barb1

After all my ablation I was told that if I went into AF in the first 12 weeks they would cardioverte me but if after 12 weeks they could not as the scar tissue would have formed. So get onto your EP now!

MickN profile image
MickN

thanks again all

I have just sent an email to my EP, I got nowhere with the AN yesterday, he was quoting my appointment date for the middle of July and that I was not due to see my EP until six months had passed, I quickly told him I wanted my 12 week post ablation date confirmed ASAP and that it would be to see the EP.

AN did mention cardioversion, but by the time they got a slot I would be back in NSR, which I did at 3pm yesterday, 14hrs of AF, now I know they tell us all part of the healing process, buit I do not buy into that, as we are told the longer the AF is actually going on for it is finding new pathways, hence that is pure contradiction.

I know ectopics, or palpations can be part of the healing process, I had them and as expected they dissappeared very quickly, however my symptoms now are exactly what thay were pre ablation in the space of two days.

And to the fact that any rhythm control meds do not work for me, well the two that I have tried didn't Flec & Dronedarone, I am pretty much up the creek without a paddle, had so much pinned on the ablation.

Jason1971 profile image
Jason1971

Mick, I've copied an extract from a web page I visit on what to expect after an ablation. Your point about the AF episode duration is something I would be interested in finding out more from my EP. As you can see it says SHORT episodes of AF, whether 14 hours is deemed short, I don't know. Not responding to your meds must be very frustrating too.

You may experience skipped heartbeats or short episodes of atrial fibrillation during the first two months after the procedure. These symptoms are common due to inflammation (swelling) of the heart tissue and are treated with medications. After your heart has healed, these abnormal heartbeats should subside.

MickN profile image
MickN in reply to Jason1971

Jaso

I think 14 hrs can be deemed long, anyway I am in AF now sat at my desk at work.

Yes not responding to any rhythm meds is massively frustrating, hence why so much has been pinned on this ablation, who nows when I will get some positive feedback, in an ideal world (or private) I would no doubt of had some form of 121 to at least see what is going on, but being stuck in the NHS process who knows when I get to see someone.

Trying to keep in good spirit, but TBH really struggling, impacts on my family as well, being so down the last couple of days, wife putting all the last bits in places for our hols to Barbados in three weeks which I had no interest in last night on taking about, not good.

Wish I could just drop the magic pill and get at least some QOL back, sick of constantly wathing what I eat, no exercise, no drinking which has led to a drop off in our social life, wife is off to a weding do tonight, I have declined now, luckily one of my daughters will be there, so sick of all this crap.

Other thing is, the amount of people who don't get AF, was out again last weekend, and again someone different could not understand me not having a beer, its only AF why cant you just take medication and get on with it, could not be bothered to explain again.

Rant over, haha, have a good day mate.

Jason1971 profile image
Jason1971 in reply to MickN

I would agree 14 hours is a long episode Mick. I feel your frustration mate, cos I would be exactly the same. It's alright me saying that now, so far things have gone pretty smooth, but that could change any day.

I opted to go with the NHS, as it was only a 12 week waiting period and getting warfarin levels correct was going to take a while, plus I had my ablation in Leeds and it has a pretty good reputation. However, a bloke at work went private and although the timings were pretty similar for the procedure, he has already had a follow up appointment and has another one next week. Would it be worthwhile paying for a private consultation? Even if they say you'll have to ride it out a bit more, it might give you peace of mind.

I'd be happy to have as many ablations as they throw at me, if it gives me hope of being AF free in the future. What worries me, is in a few years time they turn round and say there is nothing else they can do, as some people on here have experienced.

Take it easy mate.

MickN profile image
MickN in reply to Jason1971

Annoying thing is for over over 15 years I had private cover through work, that all changed December13 when we were taken by another company, who ceased the private benefit, and when was AF diagnosed March14, see a pattern here -;(

Wow 12 week wait NHS mine was well over that, nearer seven months up here in Newcastle.

I did pay to see a private EP last year when first diagnosed as I was going away in April, cant remember the cost, but anything after that would of been way too expensive.

I to worry about the years ahead, from being a vert fit 54yr old, I am I now a 55yr old struggling to put a round of golf together.

I believe you are in the younger bracket, bummer or what.

Who knows if we can hang out long enough we can get to see the miracle cure for AF, my EP is adamant they will get there, maybe as short as ten years.

Hardjuice profile image
Hardjuice in reply to MickN

Hi mick

Give me a. Call

07831577522

Keith

Good to share I'm in Durham

MickN profile image
MickN in reply to Hardjuice

Ok Keith will do

Speak soon

sendit2al profile image
sendit2al

Sorry,I've had a similar experience. Three months post ablation and having a/f daily. Cardiologist said some of scarring healed over allowing a/f to come back. Having 2nd ablation next week. Hopefully that will resolve it. This happens in about 10% of cases, so I guess we're just unlucky. Hang in there and don't get discouraged.

MickN profile image
MickN in reply to sendit2al

thanks sendit2al.

Agree, when I was discharged from hospital my EP was delighed with how the ablation went and said I had more than 80% chance of success first time round, so would appear the unlucky head has reared again.

What part of the country are you in to get a second in 3 months, I will stuggle to get one that quick up here in Newcastle.

Hardjuice profile image
Hardjuice

Hi mick

Give me a ring

Keith

MickN profile image
MickN

Keith

Lost your number mate

I am on 07920703210

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