AF forever?: I have been told I am in... - British Heart Fou...

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AF forever?

Bruce67 profile image
6 Replies

I have been told I am in permanent AF! I am due to have an ICD fitted end of April, which will take care of any irregular concerning heartbeats...but am I gonna be in AF forever, and be restricted on what I can and can't do?

The prospect of being severely restricted for the rest of my life, is not a nice one 😞 and will make me a burden for my family...

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Bruce67 profile image
Bruce67
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6 Replies
sandandkev profile image
sandandkev

Hi take it you've had AF for over a year? Or they have tried ablation,cardioversion?? As that's only when permanent AF can be made! I jad AF last year and was told it was permanent AF!! My consultant said that was wrong!

Bruce67 profile image
Bruce67 in reply tosandandkev

Nope, only since first went in hospital end Nov 23. No idea how long I have lived with it prior to that! And no treatment or procedure has been done to tackle it, so far.

sandandkev profile image
sandandkev in reply toBruce67

You haven't got permanent AF then, I got told that after going in with AF,but cardiologist told me that Dr was an ass!! You only have permanent AF once they've tried everything and that doesn't work. I have been in sinus rhythm since November(got AF july), and after echo there is a hole in my heart!

RoyM profile image
RoyM

Permanent AF is more a place you arrive at when you jointly agree with your Consultant that no more attempts will be made to revert you back to NSR. I have been in AF since 2016 and was advised because my quality of life was good the risk associated with Ablations etc, simply wasn't worth the risk. I live a full life and still swim, walk, chase grandchildren around. I am 77 . We are all different and in my experience there isn't one path in our AF journey that fits all.

Engineer46 profile image
Engineer46

Bruce,

You say that you are due to have an ICD fitted in April. Presumably you are referring to an Implantable Cardioverter Defibrillator, often used to treat ventricular arrhythmia such as tachycardia. Generally speaking, ventricular arrhythmia is far more concerning than AF and does require treatment. It's possible that an ICD may limit some of your activities and your doctor should already have given you advice on this.

As RoyM has said, if you have symptom-free long-term AF it is often considered that surgical and shock treatment are not worth the risks, especially as they are often unsuccessful or only short-lasting. Symptom-free AF does not usually impact your activities or quality of life.

If you want to know whether you have AF, just feel your pulse. If it is very irregular and with no pattern then at that moment you have AF. However, if the beat is steady you don't have AF at that time - which would mean that the AF is not permanent.

Best wishes,

Paul

Bruce67 profile image
Bruce67 in reply toEngineer46

Tbh I get told so little between consultants, go and cardio rehab team...I am left in the dark on many aspects of my health and have to muddle along!

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