I have been in persistent AF now since July 2023. I was supposed to have a check up by the EP in Hereford in March 2024 to see about cardioversion and talk about ablation, after no appointment I rang and the earliest is May 2025 ! I am only on apixaban at the moment am breathless walking fast and heart rate can hit 170, sitting it drops to 36 sometimes but mainly is 70’s 90’s ! The cardiac nurse has tried to get answers and see what can be done, I am worried about heart failure had a CT scan my gp got for me when I pushed and 51% on left right side normal. But am concerned it will get worse.
Is anyone else on here persistent and can you live a long life with this? Haven’t been to A@E since 2022 as I went in with very high heart rate and after 5 hours was sent home in AFib with heart rate 130 told it’s fine?! My gp says over a 100 is not fine for long periods. With the cardiac team that came from Birmingham (I did see EP privately but can’t afford to again. ) each one on the 2 occasions told me something different. Totally confused. Gp has asked for update.
Sorry long post.
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Lilylui
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Like yourself I've been in afib since July 2023 but it seems I've had a bit better treatment. Had cardioversion in October 23 but it only lasted for 4 days then back in afib. Heart rate is between 50 and 80 but it goes up to 180 when running. I'm a bit different in that although I also have heart failure, 41%, I don't notice the afib and am living a normal active life. I'm on 2.5 bisoprol and edoxaban. On the long life I can only say that my Mum has had persistent afib since her early 60s and is alive and well at 96. She was treated with Digoxin which has only recently been stopped. Hope you get an earlier appointment but might be worth checking your meds with your own doctor.
That's interesting and I'm a bit surprised as it differs from what I have been told. I do sometimes wonder about the knowledge even of specialists about this condition as it seems there remain many unknowns. It leaves me worrying at times!
Sustained tachycardia (i.e. a long term heart rate of >100bpm) is implicated in weakening the ventricles, reducing EF and perhaps leading on to a form of heart failure. AF can cause this, but the AF itself is an atrial issue. Heart failure itself also seems rather a less well understood condition and from what I read a while back likely has a genetic predisposition. I have read of many cases where HF has been reversed and disappeared, for example, so that is, presumably a different type of heart failure from what some get.
After a decade of paroxysmal AF and several trips to A&E similar to yours, I also had a year of persistent AF (after catching Covid in May 2023) before I could get an appointment for ablation. My GP was very much on side and kept trying to push the cardiology department for more urgent treatment, which did work eventually -- it was a very long wait to see a cardio/EP, but once I got into 'the system', things speeded up, and they found a slot for me for ablation many months sooner than I expected (in Hampshire). I had it two weeks ago; I think it's worked. For reference, I'm 60 and I have no other health problems.
My main point is this: during a phone appointment several months ago I asked the cardiology team if there was a cut-off point due to persistent AF at which they would no longer think it was worth offering me an ablation. The reply was 'four to five years of persistent AF'. (I don't know if anyone else on this forum has been told something different.)
Also, has nobody suggested flecainide or another anti-arrhythmic, and beta blockers to bring your heart rate down when it's too high? I avoided drugs for ten years but finally ended up taking them daily for nearly a year while waiting for ablation. They are not a perfect solution; I have had significant side effects. The reason I jumped at the offer of ablation was in the hope of getting off the drugs again for at least a couple of years (we'll see). But you might consider additional medication to minimise damage to your heart while you wait for treatment.
Once I got the drugs (anti-arrhythmic + beta blocker + anticoagulant), I took them faithfully for six months but was still in persistent AF. I phoned the cardiology department and we agreed that I'd double my dose of anti-arrhythmic (from 50mg to 100mg twice a day). It took around a month, but it did eventually cardiovert me, and I had intervals up to one week without AF while I was still waiting for ablation. Everyone is different; some people cardiovert within an hour after taking 50mg, whereas it took me a month at 100mg twice a day. That might have been because I'd been in persistent AF for months by then.
Keep pushing. Remind everybody you're still out there and waiting for treatment. Ask your cardiology department about an anti-arrhythmic and rate control, either as "pill in the pocket" (for episodes of fast AF) or a daily dose.
I was told once in persistent one is too late for ablation, then one's weight then ECHO suitability.
At 2 years 5 months the answer was NOT for me.
Also at night my Night H/Rate is low at 47bpm avg.
Diltiazem is a marvellous anti-arrhymic safer med by bringing down heart rate dramatically.
It might be that I was not offered it because of my night rate but Dr said the CD type with me is being used up at the beginning of the day and so my normal low at night takes over.
Yes I was left in rapid H/Rate Metoprolol @ 186bpm couldn't exert, and Bisoprolol taken up to 10mg, both BBs dd not bring down (control) my h/Rate but CCB DiltiazemCD did.
I had the flecanide it didn’t work they can’t give me beta blockers due to asthma and my heart rate drops too low. I have spoken to them but apparently the EP now doesn’t come monthly to Hereford like he used to, I even asked for an appointment in Birmingham but still a no.
Urgh, that's tricky if you have asthma as well. But as I said -- from what I was told by a cardiologist at a major hospital, you should not be ruled out for ablation even if you are in persistent AF for two or three years. Not pleasant in the meantime, but surely you will be seen and treated in that time frame.
Flecainide didn't work for me either for six months until I doubled the dose. I thought it should be taken with a beta blocker (other people may be able to correct me on that), which is where it gets tricky for you. If it was prescribed for you once in spite of the issue with BBs, it's worth asking if you can try it again on a different dose, or try a different anti-arrhythmic.
Hi Lily, I was in persistent AFib for a year prior to my ablation last October. Now in NSR. I didn’t want to wait around for appointments so paid privately with an EP who works both privately and with NHS. I only had to wait 2 or 3 weeks for appointment and had first class advice, meds adjustment and time to discuss options.
I had a private one with my EP in 2022 he said to get on nhs list he contacted my cardiologist so I was put on there, saw them twice not the EP ! And can’t get to see them now until May !
Can’t afford another £250 and the cost of travelling sadly,
But it didn’t push me up the ladder I was just given flecanide by him for P AFib which didn’t help
Hello Lilylui, Sorry to take so long to reply but been a bit unwell myself.
Re Apixaban, I can only praise it as it feels as if I am not taking it. I tried Warferin, hopeless, then Riveroxaban but felt tired. I like the idea of taking it twice a day as it feels smoother if that makes any sense.
Currently struggling with PMR and steroids so apologies again for late reply. I hope you find something to suit.
Re slow heart beat, I was always at 40 even when older, now at 80 yrs it’s higher and after a biopsy my top BP read 190 so they made me sit quietly till it went down. There is no one rate for everyone, we act differently, for me it anxiety that does it.
Hope this is readable, just had both cataracts operated on thanks to steroids and don’t have new lenses yet so don’t see too well.
Not much fun any if this, is it.?
Don’t give up hope will you? All my best wishes, Rotsky xx
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