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Permanent AF

pwoody profile image
31 Replies

Hi everyone. I have recently been diagnosed with permanent AF following having paroxysmal AF for over 4 years. My heart rate never goes much beyond the 70s so no one seems worried about it, the GP has just increased my bisoprolol from 2.5 to 5mg. I am on other appropriate medication including anti coagulants of course. On the whole I feel fine and my GP says there is no need to see a cardiologist. In a way it is easier having it permanently. My only worry is would I be able to have an operation due to my AF, you never know what can happen in the future. I would appreciate your thoughts.

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31 Replies
mjames1 profile image
mjames1

Without going into the merits of treating or not treating permanent afib and not knowing your case -- I take exception with your GP who says you don't need to see a cardiologist.

At this stage -- and arguably it should have been sooner -- you really should see a cardiologist and possibly an ep regardless of what your GP says.

First, the diagnosis/decision that you're in permanent afib would be confirmed/made by someone more expert in afib and second there may be options for you that your GP is not aware of.

Also, one doesn't just pop from paroxysmal afib into permanent. By definition there would be at least a year of "persistent" afib in between, where the decision making and treatment could be different.

Jim

pwoody profile image
pwoody in reply to mjames1

Thank you for your reply, much appreciated.

mjames1 profile image
mjames1 in reply to pwoody

Mind you I wasn't saying that your present course of treatment isn't correct. In fact, you very well may be on the right course.

Everyone is different. Some like to stick to one medical opinion. For me, I always like to get at least one second opinion. And in the US, by now you would have been referred at least to a Cardiologist for that second opinion. They may add nothing new or they may give you an "ah ha" moment and change the course of things.

You mention your heart rate is in the 70's so no one is concerned. But you also mention that your bisoprolol has just been increased from 2.5 to 5mg. I don't know how well you tolerate the side effects but there may come a time when it may have to be increased again to keep your heart rate controlled. Getting set with a cardiologist or ep now can also be a reasonable hedge on the future.

Jim

pwoody profile image
pwoody in reply to mjames1

It is not so easy here getting referred to a consultant just because you want to. Unlike the U S we do not have private medical care. However I could pay to see a cardiologists privately but for the time being I don’t feel it is necessarily, but I am aware that could change. Bisoprolol suits me fine, I have no side effects after being on the increased dose for about six weeks. Thank you again for your reply.

MummyLuv profile image
MummyLuv in reply to pwoody

From the consultations that I had with surgeons the long term persistent or permanent afib weakens the heart and can lead to heart failure although in your case your heart rate is well controlled which will lesson the risk. It does progress though and so you should keep an eye. You also have the consideration of taking blood thinners and the impact this can have on emergency treatment. Please see my post on mini maze. I had one on Friday after 5 years plus on long term persistent afib. I can give you the details of the surgeon for a private consultation if you PM me. A cardiologist even if you pay privately at best will offer you a catheter ablation which has a low success rate for persistent afib

I’m not medically trained but to some extent I can understand why your GP might take the view that at the moment, there may be little benefit in seeing a cardiologist. You seem to be asymptomatic, have a heart rate well within normal range, on an anticoagulant and leading a relatively normal life. Generally, EP’s tend to pursue ablation therapy and given your current state, a) it’s unlikely one would be offered and b) I doubt you would have one if it was! If you saw a Cardiologist, many are not enthusiastic about ablation therapy and most are unlikely to change your current treatment plan for obvious reasons.

With a well controlled heart rate it’s unlikely that your heart is enlarged or that you are a candidate for heart failure and when you think about it, there are tens of thousands of folk who like to be in your position. That said, I guess things may change, so seeing a consultant at sometime in the future may well be beneficial but at the moment I think I would be tempted to leave things as they are…….

pwoody profile image
pwoody in reply to

Thank you so much for your assuring reply FlapJack. I obviously will keep an eye on my heart rate and continue as I am and get on with my life without worrying too much. Many thanks once again.

jeanjeannie50 profile image
jeanjeannie50

I agree with Flapjack I'd stay as you are as your heart rate is so low. I'm in permanent AF too, have been for over two years and my rate generally stays below 90. My first two ablations made my AF worse, they are not always the wonder cure that some people think!

Jean

pwoody profile image
pwoody in reply to jeanjeannie50

Thank you Jeanjeannie for your reply. I have seen several doctors during my AF journey including in A&E and none of them seemed concerned because of my low heart rate. I certainly wouldn’t want an ablation and like you are happy to continue as I am on the right medication unless things change. Many thanks again for your reply.

Buffafly profile image
Buffafly

It’s good to hear your experience as newbies sometimes feel anxious about eventually going into permanent AF. Everybody’s different of course but your experience is very positive.

pwoody profile image
pwoody in reply to Buffafly

Yes I was anxious to begin with but feel easier about it now. Thank you for your reply Buffafly, much appreciated.

Florence-Nightingale profile image
Florence-Nightingale in reply to Buffafly

Hi Buffafly I was in PAF for several years felt awful, in and out of A&E then went into permanent AF and felt so much better. I had declined ablation and once my rate was under control was discharged by cardiologist. I am 70 a retired nurse practitioner and have come to the conclusion to just live and enjoy life for as long as I am given. I did have to adapt my lifestyle I do have a little afternoon snooze due to getting more tired but think a lot of us do even without AF. I would just add as some people who have seen previous early posts of mine I was absolutely terrified when I first got this condition being a nurse did not help, it was this group who are so knowledgeable that got me through for which I am forever grateful too.

Hiya pwoody,

Just scrolled through other comments as well as your post. Hmmmm ! Your case sounds similar to me. So just to clarify something for me ..... who diagnosed ( 4 years ago) your original paroxysmal AF - a cardiac consultant or a GP ?

Who more recently diagnosed your permanent AF, a cardiac consultant or GP ........ did you have any heart ultrasounds (ECG's) and what did they say about the state of your Left Atria ? just outta interest !

I was diagnosed at 65 in Jan 2010 and put straight away on 5mg Bisoprolol and Warfarin. In Jan 2021 my Bisoprolol was increased to 7.5mg ( no sweat) Warfarin is still my preferred A/C of choice. I lead a normal active life drive up to Surrey from Cornwall often and will be doing it more often in future, drive buses - DVLA renew my PCV licence each year after an annual medical and my HR stays around 62 to 67 and at night drops down to 51 to 58 bpm roughly. My Left Atria was damaged (dilated) in the initial AF mugging in 2010 and subsequent ECG's have shown that it hasn't returned to normal but then nor has it worsened. Hence my question about ECG's .... as time goes on and as you age it will be wise to have ECG's carried out to keep an eye on your LA.

Right at the start I declined ANY prospect of an ablation unless it were a last, an absolute last resort and so it hasn't happened. I have had a multitude of other (non cardiac related) surgical proceedures over the years since with nothing but good side effects including a knee replacement.

The only warning I would give ..... did your cardiologist ever give you a warning about being asymptomatic .. mine did right in the beginning The point is if you are a symptomatic or have that tendency you can be tricked by this little monster we call AF into thinking/believing you are home free with nothing wrong. You can be in AF and not experience/feel/ have any symptoms. Very dodgy!

About 3 to 5 times a year I have bouts of AF, mostly starting in the early hours having digested food ( but not always) usually lasts 2 to 4 hours but has been known to be up to 15 hours .......... wipe out ! But any events of any one year is of course no guarantee of what will happen next year.

So, as long as all the measures I've touched on above, ECG checks, constant/ regular HR readings / checks on blood pressure, and no interventions by A & E your GP is probably saying the right thing .... especially if the Bisoprolol is doing its job without side effects and you are feeling pretty good then go with the flow. I am/ I do. And stay away from ablations if you can. Ultimately its up to you to keep a mini diary of any AF or other Cardiac events. In this rubbish NHS climate your GP is probably doing his bit in keeping you away from a cardiac consultant until you really need to see one. If at anytime you felt Bisoprolol was failing in its task and your HR started regularly going over 100/110 bpm or higher and the Bisoprolol was having no impact then that would be the time to holler for a Consultant, preferably an EP.

Stay well.

John

BorderMLH profile image
BorderMLH in reply to

Why do you advise to stay clear of ablation? I am on a waiting list to have one under G/A after 2-3 bouts of AF a week, I wasn’t keen to be honest but cardiologist advise best action for me

in reply to BorderMLH

Sure,Remember, this was a conversation with my consultant over 12 years ago in hospital when we were reviewing the options going forward. He kindly explained the pros and cons of the procedure and right on the spot I expressed the view that it wasn't for me. It was an intuitive thing, deep inside me I felt ...no way.

I just didn't want anyone barbecuing my heart 💓💓💓

Nothing in the least bit scientific in my decision. Nor has it been one I have regretted. Some months later I found a link with the vagal nerve and concentrated on food and diet and medication. Stayed with that, job done.

I think Flapjacks reply spot on. However, if you have never seen a cardiologist I would suggest to GP (firmly) that although AF often mana fed on primary care you would like an assessment / consultation in cardiology. They can really examine your heart and confirm that Bisoprolol is the best. I thought it was for fast rate whereas your rate is not fast? Won’t it make it slower? In my experience GPs have a tendency to see AF as a chronic primary care condition and aren’t that interested in the details but in my case they were wrong re value of a cardiologist appointment (but my presentation was different to yours). It is not true that in NHS we have to simply agree, you can ask for second opinions, etc etc, firmly and get them! Good luck

Ppiman profile image
Ppiman

I have a friend now nearly 90 who has been treated for his permanent, low rate AF with only warfarin for very many years. Like you he feels well, and the AF seems not to have done his heart any harm. I did press him to have an echo-cardiogram a couple of years ago and I think, if you haven't had one recently, that would be what I would do. His revealed nothing unexpected for his age.

Regarding your GP, he or she will have a mass of experience from similar patients and be working to NICE guidelines so will be giving you good treatment. There must be a reason to be given bisoprolol, for example. A private consultation will cost, with a scan, around £500.00, or £1000.00 with an MRI (the gold standard).

Steve

secondtry profile image
secondtry

Thanks for posting, which has generated some useful extra information. Hope you got the feedback you were looking for.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hipwoody

You are good if your heart beat is less than 100.

I am controlled at 93.

I just had my second operation on 2 March.

1. Thyroidectomy. but uncontrolled - cancer removal. Feb 2022.

2. TVT Johnson and Johnson partial removal of the surgical mesh. So much inflammation found.

2 weeks ago and 5 months on CCB Diltiazem, the doctor said that she couldn't find any irregularity.

In 2019 introduced again to Metroprolol I had avge heart rate day 186 and night 46.

In 2021 changed to Bisoprolol I had avge heart rate of 156 day and 48 night.

In Dec 2021 Diltiazem 120mg a.m and 2.5mg Bisoprolol at night. BP 123/72. HR 93 day/48 night.

CCB Calcium Channel Blocker controlled my H/R.

Was it CCB or removal of inflammation that has stopped my AF.

The Dr has asked Heart Specialist to have me have another ECHO from 2021 /Feb and ECG connected to a treadmill. As AF showed on EXERTION.

I guess although mine is persistent on exertion it returns to low beat at night but it was still irregular.

CONTROLLED you should be able to have an operation. I stopped my thinner PRADAXA 3 clear days prior to op, on op day and 3 days after.

I'm praying that my AF is lost so that I can come off PRADAXA.

I wish you well and your heart specialist is happy with your meds. Bisoprolol for rhythmn and keep your h/r down.

cheri JOY

My is called rapid and persistent.

pwoody profile image
pwoody

I am 78 on Wednesday. I paid privately to see a cardiologist at the beginning of Af just over four years ago . I had yet another ECG and ultra scan and all was well consultant agreed that the gp had put me on the right medication. Went to A&E once because I’d had Af for over 7 days, again they said everything was okay because my heart rate was low and again was advised that it wasn’t necessary to see a cardiologist. When I went into permanent AF about six weeks ago, had another ECG at doctors. As I have said I feel well now that I am in permanent AF but will see a cardiologist privately if anything changes. Thank you for your reply

pwoody profile image
pwoody

Thank you for your birthday wishes. I do avoid all those things you mention and try do do everything I can to help the situation. Take care yourself.

Karendeena profile image
Karendeena

Pwoody, my mum is in permanent AF and has been for a few years now. It was discovered when she went into hospital for something else. She feels no symptoms and she takes an anticoagulant Apixaban at 2.5mg twice daily. She is 94!

pwoody profile image
pwoody in reply to Karendeena

Thank you for your reply and it is good to hear that your Mum is doing well in spite of being in permanent AF, I hope I take after her. Please give her my good wishes.

Karendeena profile image
Karendeena in reply to pwoody

Pwoody, thank you 😊

Ducky2003 profile image
Ducky2003

I personally would still want to be under a cardiologist, no matter how well you feel.My AF has caused my heart to enlarge and has caused an issue with my mitral valve. This would not have been picked up by my GP.

pwoody profile image
pwoody in reply to Ducky2003

Thank you for that information, it is food for thought.

bayonnejoe1 profile image
bayonnejoe1

My situation mirrors yours in all regards. 70s resting pulse, permanent AF after 4 years proximal, beta blocker, anti-coagulant. I'm in the States, so I have a cardiologist. It's SOP. What has helped, is I immediately received referral for a stress test. Have had three since my diagnosis ten years ago. They provided clear data that my heart muscle is in very good shape. That finding has provided a great deal of solace in coping with the increased stroke risk AF has, even with anti-coagulant treatment.

pwoody profile image
pwoody in reply to bayonnejoe1

Thank you for your reply. I think the only way I can get to see a cardiologist for reassurance is by going privately which I will have to consider in the future.

queseyo profile image
queseyo

I'm very surprised your GP hasn't referred you to a heart specialist. I agree with mjames1, you should see a Cardiologist or a EP. All the best

pwoody profile image
pwoody in reply to queseyo

Than k you

PTranter profile image
PTranter

What sort of operation are you referring to? I to have permanent AF and recently had a pacemaker inserted. All that happens is you go off the blood thinners 2 days prior.

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