Permanent AF: Hi I was diagnosed with... - Atrial Fibrillati...

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Permanent AF

Suzie111 profile image
17 Replies

Hi I was diagnosed with permanent AF a year ago and put on Apaxibin and Bisoprolol by my GP. I had an echocardiogram in June and never heard from anyone re results. I have found results on my medical records and found I have mild regurgitation in three valves and mild biatrial enlargement. While I think all of these are not any problem at the moment I have not had any further GP appointment or seen a cardiologist. Is this normal and do I just get on with it?

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Suzie111 profile image
Suzie111
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17 Replies

Quick answer to both questions is Yes, No and shouldn’t be.....but we are in difficult times. I’m not medically trained but it looks like the main points are covered ie anticoagulant and heart rate and provided your pulse rate is normally below 100 bpm, the condition of your heart should not deteriorate. You say you have been diagnosed with “permanent” AF and it’s possible that that may not be entirely accurate unless there have been attempts to revert you back to normal sinus rhythm and they have failed.

First, I suggest you take a look at the pinned post, Useful links for Newbies and Oldies, link below, as this will help you to find out more about AF.

healthunlocked.com/afassoci.........

If I were you, I would contact your GP and ask to be referred preferably to an Electrophysiologist (cardiologist who specialises in Arrhythmias).

If your symptoms and/or side effects from medication are troublesome, they are likely to suggest a treatment plan which would include a cardioversion as this will determine whether or not you can be reverted to NSR. If it works, even for a short time, and you feel significantly better, it does open up opportunities for other treatments such as a Catheter Ablation.

Appointments to see specialists may be difficult and lengthy especially at the moment. If it’s possible, consider a private appointment which should cost less than £300 but make sure you take copies of all test results as these will be very expensive.....hope this helps.

Only your GP has the information necessary to answer your questions and decide whether referral is appropriate, and if yes, whether to a cardiologist or electrophysiologist.

beardy_chris profile image
beardy_chris

Hi Suzie - what you don't say is how you feel at the moment. Some people (like me) are lucky enough to be relatively asymptomatic. As Flapjack says, if your heart rate and stroke risk are under control and your quality of life is good, there may be no need for further interventions. I had one cardioversion that lasted for a couple of weeks and, to be honest, I didn't really feel any different. As a result, together with my cardiologist and EP, we decided that the risk/reward of further interventions were not justified.

If that is the case for you though, I think it would be good if someone had discussed it with you!

Overseventy profile image
Overseventy in reply to beardy_chris

Hello Chris, I have AF and am taking medication. I was offered an abalation but as my symptoms were not too frequent I said no .They are getting more frequent now, can you describe how you feel I find it very hard to tell my Doctor about the sensations I get.

beardy_chris profile image
beardy_chris in reply to Overseventy

Essentially, I feel fine! I think my stamina is less than it used to be and I sometimes get a little breathless but, as I say above, I am relatively asymptomatic. One problem with describing my symptoms was that there was a lot going on at the time! I gave up smoking, I think I got depressed as a result of beta-blockers and, as with all of us, I was getting older (in my early 60s). Identifying what was due to what was difficult.

It might help if you keep a diary and note down how you feel. You might then be able to identify symptoms better. Good Luck!

steve60 profile image
steve60 in reply to beardy_chris

Hi Chris those were really positive replies and pretty much sum up my Afib as well. Been on 1.25 of bisoprolol for about 5 yrs now condition not got better or worse. Am 60 now and according to the chadsvac system if my condition does not get any worse I shouldn't need intervention until I hit 65. Here's hoping. Stay well

Suzie111 profile image
Suzie111

Hi I don’t really have many symptoms only a highish pulse rate 80 to 100. Feel a bit breathless and the Bisoprolol is making me feel a bit groggy and has made me put weight on our GPS not very helpful at moment.

steve60 profile image
steve60 in reply to Suzie111

Hi suzie trial and error with the bisoprolol dosage I'm on 1.25 per day and seems to do the trick

bigbearatthecave profile image
bigbearatthecave in reply to steve60

With respect to Suzie111 and steve60 1.25mg of Bisoprolol is the level I can tolerate, I still have AF according to my Apple watch (avoid if you wish to stay sane ) . Any higher dose makes you dopy. So it is a balance. In general, as a layman, if you feel right you are right.

steve60 profile image
steve60 in reply to bigbearatthecave

My Afib never goes it is permanent bisoprolol masks the condition and makes life ok although exercise is limited

Ianc2 profile image
Ianc2

Is that a resting heart rate?

10 years ago when I first had AFIB, I had my first echocardiogram. The Cardiologist said I had mild, I think he staged it at 1, regurgitation of the Mitral Valve. Said as I aged ... it might need intervention to correct.

However, my AFIB came back in AUG 2020. I did another echocardiogram in preparation for an ablation (that was done OCT 2020). My Cardiologist examined the Mitral Valve again and said ... I see no changes from 10 years ago; therefore, it's stable ... and likely to stay stable and functional for the rest of your life.

Since you said 'mild' ... I hope yours end up the same.

GuyThoma profile image
GuyThoma

My main contribution is to say that Bisoprolol comes in a surprisingly large range of dosages. My impression is that consultants like to err on the high side of bisoprolol to keep the heart rate as low as possible.

My secondary contribution is to say that I was additionally prescribed perindopril. This is an Ace inhibitor to widen the blood vessels.

Szycttnsx profile image
Szycttnsx

I was given bisoprolol to slow down a fast heart rate after a mitral valve replacement. all I can say is it has worked but I feel more tired than before

Suzie111 profile image
Suzie111

Thanks for your help it has been really useful.

cuore profile image
cuore

Permanent AF is the terminology used as being the situation when the operator and you decide that nothing more can be done. Therefore, what you are really saying is that your GP diagnosed you as having persistent AF, that is, your arrhythmia was there 24/7. AF begets AF, the more you have the more you will get. At the persistent stage, the more your heart will be remodelled. Since you have lived with AF for one year, the terminology becomes long standing persistent, and the harder it is to ever bring you back to NSR. By the six month stage persistent, my heart got so badly remodelled that if I had not had an ablation at the six month stage, I never would have been able to return to sinus.

I do not have kind words for your GP; I believe you are getting substandard care because he has not referred you. I suggest you go for a private consultation with an electrophysiologist to get back on track. No, you do not just get on with it; you get it sorted out, and definitely not by your GP.

Diver2 profile image
Diver2

I agree with flapjack. Get a referral to an Electrophysiologist. Permanent AF isn’t usually the diagnosis and there are things they can do to try to get you back into sinus rhythm... I do recommend you asking for copies of all your ECGs whenever you get them because over the years I have brought them to the EP to see if they’re still similar which helped prevent some tests and suggested some tests in other situations. Chronic Afib usually takes at least a year to be diagnosed and that’s after multiple treatments have been tried and proved unsuccessful. GPS don’t usually treat rhythm problems of the 💜

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