Hi all, I've been told I need an ablation as soon as possible but I'm aware that this may not sort out my problems. My question is this: how do you cope with the change from PAF to permanent AF?
My PAF has been awful - very symptomatic which usually puts me in A&E. Does this continue in permanent AF?
I suppose i'm just worrying about it but Ignorance is not bliss!
I have gone from very symptomatic paroxysmal AF, although episodes varied enormously, to mostly asymptomatic permanent AF.
Hi baba, I seem to be following this line. My PAF put me in A & E twice last year and I have had a few episodes since. I seem to be getting more fluttering that I can cope with so think it's changing. Having said that I had a whammy of a fast episode last weekend which lasted over 24 hours. This beast is so unpredictable
Baba, I have permanent a fib and heart failure but was told in no u certain terms an ablation would only work for a short period maybe only a couple of days. It has been a long year since I was diagnosed after almost collapsing and three days in hospital but there us a small flicker if light at end of the tunnel. My a fib is on the whole under control with meds, bisoprolol, digoxin and nisoprol. I have had every side effect known to man and currently feel very tired most of the time but am forcing myself to do some light exercise, chair pilates and walking every day if I can. I loved my old lifestyle where I was healthy and fit but am learning very slowly to embrace what I am now left with. Xx
I have no personal experience but understand that the body soon gets use to AF when permanent and it can become asymptomatic. Provided you are anmticoagulatd and your rate is well controlled there should be no adverse outcome .
Remember for some unfortunate people the first time they find they have AF is when they have the stroke.
Hi BobD, that's very true. I'm very grateful that mine came without the stroke, bu I'm trying to find out the possibilities that may happen. I'm taking Apixaban , Flecanaid and Adizem but the meds mustn't be controlling this too well. Thank you for your encouragement and the time you take for all your replies.
Hi, what makes you think you may go into permanent AF? I see you haven’t had PAF for very long. I have had it for 20 years and still not permanent, I thought I might be going that way when I had a 7 day episode with some periods of slow AF but it didn’t happen. My EP convinced me to have an ablation partly on the grounds that I might go into persistent AF but that was 5 years ago and though the AF came back after 2 years 7 days is my record 😀
Hi Buffafly, I'm cursed with too good an imagination and the only way I can still my ensuing panic is to find out as much as I can. I know this is a pessimistic outlook but I would rather be ready for any contingencies. I still haven't quite got over the frustration and panic each AF event brings. I've been told that an ablation is necessary asap. so I decided to look at all possible outcomes, but hopefully it will make all the difference. Thank you for taking the time to reply.
So you would look forward to permanent AF! But hopefully the ablation will be at least partly successful. I only take Zemtard 180 now so big improvement there. If you are determined to look at the full Worst Case Scenario range there is always Pace and Ablate, which stops PAF in the sense that it doesn’t affect your ventricles so you aren’t much aware of it.
Best wishes for the ablation 💜
Hi, a friend of mine had PAF that put her in hospital quite frequently, she decided to have the ablation as it was controlling her life and she wanted more freedom to travel and she found it very debilitating. That was January 2018 and she is off all meds with no re-occurance, although she does know it could come back. For now she is happy. I am going for ablation as I don't want to spend the rest of my life on meds and I don't want to be worrying every time I go on holiday
Thanks for taking the time to reply. I’m glad your friend is so much better and I hope you'll feel the same. I know exactly what you mean about holidays Etc..
Hi Bassets
I've had ablations and my last one really helped. Used to have very symptomatic PAF where I'd end up in a hospital ward for a few days.
I'm now in permanent AF with heart rate between 60-90 when resting, can live my life as normal and I'm mostly unaware of any juddering beats in my heart. I can walk the coastal paths where I live and they're very steep, just have to take it all a little slower at times. My life is good.
Jean
That's absolutely great! I'm so glad for you. I'm afraid the Af + Covid worries have been getting to me, but thank you for your rely - it's cheered me up!
Hi. This is so encouraging to read as I am really trying to come to terms with the adjustments I am having to make. See my response earlier. I want to be able to say 'my life is good. Xx
Please visit our website and view some of our resources info@afa.org.uk as you may find our A F Fact File beneficial in providing you with some advice in dealing with symptoms
Thank younTracy, that's very good 
I just had my 4th ablation 80 days ago. I started out with rare AFIB episodes, but over a year progressed to once a month, then once a week then twice a week. In the hospital too much getting converted. Decided on ablation. When in AFIB ... felt quite uncomfortable. Felt every beat/jiggle. Started to almost pass out at times.
After my 2nd AFIB ablation ... went almost 10 years without a problem. So, contacted a world-class EP, who performed the ablation in OCT.
Ablation is easier now than when I first had it done 10 years ago. I recommend getting the most experienced EP you can find who specializes in AFIB ablation.
If you're luck ... you might get a cure on the first one. However ... it's not unusual to need a second one to get up to that 90 percentile success rate.
Good Luck! with whatever you decide. Everyone's anxious before an ablation, but stay calm anyway. It's pretty easy and recovery is pretty straight forward and fast.
Thank you very much for your kind comments, that makes me feel easier
I totally understand your mind frame ! At any symptom I extrapolate to the worst case scenario . And my af journey so far was very occasional paroxysmal af moving to more regular ( monthly) and longer (days) episodes . I was convinced I would soon be a housebound shadow if my former self. And was a nit transfixed by the idea of permanent afibI have now had 2 ablations first made things worse because it morphed my afib to a trial flutter which was less easily controlled by things like flecainide . However my cardiologist told me that flutter was/ is mostly more successful to ablate
Second ablation 8 weeks ago and so far so good.. so great ! One episode of excessive skipped / atopic beats that my Kardia described as unclassified but my passimism identified as catastrophe! But actually 8 weeks of normal heart rate.
My advice is to consider ablation it really seems to be able to work, chose an experienced cardiologist/EP but also ask about the mapping equipment they have. New kit makes a big difference I am told
Good luck
Steve
Thank you! I hope you continue to feel so well. I am due to speak to a cardiologist this am so will discuss this with him. I expect to be referred to Wythenshaw, where I'm told ,they excel at this. Heres hoping for
Strong recommendation at wythenshawe is to ask if you can be treated by Ben Brown cardiologist. I have seen him privately but he is mostly based at wythenshawe. My personal experience has been that he is absolutely brilliant Explains things carefully , gives you a proper assessment of risk benefit and is an all round good chap!
I have been in Permenent AF for5 years. I started with PAF. In 2009 which was awful. I went into permanent AF in 2016. I had a Cardioversion early in 2017 which put me into NSR for 11 hrs. I didn't notice any difference between NSR and my permenent AF so I agreed with my EP not to try again for NSR, which of course is the definition of permenent AF. Five years on I don't regret that decision. I am able to walk any distance, I cycle, swim and still chase my granddaughter about. I am a male of 73 and my medication consists of Apixiban and 1.25mg of Bisoporol daily. My resting HR is between 65/70 BPM. I have also been discharged from my EP and I am very happy to have stopped chasing the holy grail of NSR. Good luck on your journey.
Thank you Roy M, this has helped to stop me worrying so much and cheered me up. There's such a lot that isn't readily explained about this condition and I felt as though I was trying to see through fog. It's great that you and other kind people on this site take the time to reassure everyone else. Thanks again.
Hopefully you will find a treatment that works for you, as most do.
For a few of us nothing stops the slide into permanent AFib but, like RoyM, I’m here to tell you that you can maintain a pretty good QofL whilst in AFib. As BobD suggests, above, your body gets used to permanent AFib and it becomes less noticeable. I actually prefer permanent to the PAF where I was in NSR for a few days and AFib for a few days, the AFib felt much worse then.
Like RoyM, I continue to walk and cycle, all be it at a more sedate pace! Walking up hill has to be slow and steady but I can still manage Lakeland fells....when not in lockdown of course.
I only take an anti-coagulant and boost my magnesium intake.
You sound as though you're doing well - long may it continue! Thank you for your kind comments which, as I'm sure you know, will help a great deal to stop worry and panic. How lovely for you to climb Lakeland fells - its been some time since I've done that.
This is also encouraging to read thank you. I just want to be able to walk and swim with my great granddaughter. Xx
I've been in persistent/permanent afib for a year now with a resting heart rate between 80 and 95 or so, with 125-30 with exercise. This is a big improvement for me, as when it would come and go, I'd experience much higher heart rate (150-170) and it would knock me down for the day. I think my body has adjusted to it and as I told my EP yesterday, I don't even feel like I have afib any more.
Your question skips the step persistent AF where your heart gets remodelled before it goes into permanent AF.
You have also " been told I need an ablation as soon as possible but I'm aware that this may not sort out my problems. " Your "My PAF has been awful - very symptomatic " which appears to reveal the reason for the hasty ablation advice.
Other than wondering what it is like to be in permanent AF (which you are not close to because you have not gone through persistent), what other problems are you entertaining?
I don't get the 'you have not gone through persistent' I went straight into permanent but I also have heart failure. Xx
I was merely using the definitions whereby when one has continuous AF for seven days, the term becomes persistent. When one is persistent for one year, the term becomes long-standing persistent and when operator and patient agree that no more can be done, the term becomes permanent and you remain in AF.
Therefore, I felt you were still exploring your options while persistent and it was your intention to go back into NSR so you were jumping the gun, merely my opinion, in concluding you would be remaining in AF. I would certainly want to think I would remain in sinus rather than take the approach I will remain in AF, granted you say you have heart failure.
Hi core, I wanted to find out about the various stages when I asked the question- perhaps I phrased it badly. I feel that I don't know enough about the condition as apart from reading various things, as it's not something that has been explained to me in enough depth. I'm trying to find out all the ways this could go as I am naturally an anxious person and if I understand what's happening, I can cope much better. i'm not sure what you mean by 'other problems' but my other health problems are hypertension, asthma, and bronchiectasis at the moment.
Are you considering an ablation? In many cases PAF progresses into permanent afib...(but not always). But a good ablation often changes everything, including the progressing rate.
I've been told I need an ablation so will go don this route now. It won't be for some time though. Thank you for your kind reply
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