permanent afib

[Byke]

My husband is in permanent AF, he has seen a doctor who didn’t seem worried , but told him to have an ECG. Unfortunately their ECG machine isn’t working and he has now been waiting four weeks for one. Should he be worried, he seems ok in himself. Every one here is so supportive I would like to hear what people think as I am worried. Thanks

[BobD Volunteer]

Most people in permanent AF actually feel better than those in paroxysmal as the body soon gets used to it. So long as rate is well controlled and the patient anticoagulated then no other treatment is offered. It is impoprtant to understand that "Permanent AF" is not a diagnosis but an agreement between patient and doctor that no further attempts to obtain NSR will be made so if your GP has just made the decision without discussing with your husband then maybe he shsould seek a second opinion.

[Byke in reply to BobD]

Thank you for that, I feel a bit more at ease now, he has had Afib for years, recently bought an Apple Watch that shows the permanent Afib. His heart rate is usually in the fifties. No one seems to be explaining anything.

[CDreamer in reply to Byke]

I think this is where you feel the value of this forum from the collective wealth of knowledge and experience because the medics rarely have the time to sit down and explain things fully these days.

[Singwell in reply to Byke]

My brother is in permanent AF and hardly notices it. If your husband's HR is high then he might need a rate controller, but that doesnt seem to be the case. Has his GP done the CHAD-Vas Risk assessment? That's the most important thing, to avoid him having a stroke.

[CloudRunner in reply to Byke]

I agree with Bob. I have been in permanent AF for several years after two failed ablations. I definitely feel better in permanent AF than I did in proximal. I only take anti coagulants and no other drugs.

I had a phone conversation with my consultant recently who is perfectly happy with this and reminded me that anything that they do is totally about quality of life as AF, in itself, is not life threatening.

An Apple Watch will only tell you what you already know. The Kardia is good but once again will just confirm what you already know and can become addictive.

In the situation that your husband and I find ourselves in then just getting on with life is fine.

[Ppiman in reply to CloudRunner]

If AF becomes permanent, there's little a home ECG can show of any value, I should think. The Apple Watch is pretty useful for so many other things, at least (in fact, rather a wonder of modern technology, at a price).

Steve

[Sylviep7 in reply to BobD]

I have permanent 24hr afib and it does not rule out further treatment. Cardiologist offered an ablation.

[BobD Volunteer in reply to Sylviep7]

You are missing the point. Your AF is not permanent but persistent. Permanent is not a medical term but defines that both doctor and patient have agreed that no further attempts to obtain NSR are to be pursued.

[Sylviep7 in reply to BobD]

I get your point - it was the cardiologist who called mine permanent - then went on to offer possibility of ablation.

[Ppiman in reply to Sylviep7]

It seems that these terms are all playing with semantics in a way, since the way forwards can easily change if new treatments become available. And that's something we all hope for. As with so many ailments, AF is still treated with procedures and drugs much as it has been for many years now.

Steve

[BobD Volunteer in reply to Ppiman]

In the grand scheme of things Steve about thirty years since the first catheter ablation. In the twenty years I have been along for the ride there have been countless "wonder treatments" the latest being PFA but nothing has materially changed. I still have hope though for those who come after us.

[Ppiman in reply to BobD]

It's interesting, really. PFA costs a fortune but likely won't do much to improve outcomes. It might speed up the procedure though and make it safer?

My son's colleague was one of the first candidates for ablation, he told me. I think he's had five all told and can't have any more and his AF has now returned with flutter added into the mix. It's easy to think things really have changed - when they haven't. Reading about heart failure, for example, recently, I've read that newer treatments have very much improved outcomes - and it seems they have; and yet, when I look closer, I wonder which treatments have done this since most have been around for decades. It can seem that we are still in the dark ages at times. It's very strange. I have said before that I can imagine the day will come when doctors say about ablations, "They used to do what? You're kidding me!" Such a day can't come too soon, but it will likely be long after it matters to any of us.

Strange old world!

Steve

[baba in reply to Ppiman]

"semantics" Exactly

[108cat]

Is he on anticoagulants to protect him from stroke? I think that's the main thing to worry about.

If not then you need to get medical advice .. it seems that GPs don't always understand the possible implications of AF as well as they should. Is he under a cardiologist?

If he's not on anticoagulants I would call 111 or take him to A&E they should be able to help him and reassure you.

[Byke in reply to 108cat]

Hi, thanks for your reply, yes he is on Apixiban and ibuprofen. It’s just that doctor doesn’t seemed bothered by it, and wondered if we should be.

[mrsg46 in reply to Byke]

Hi, not to alarm you but has your husband been prescribed Ibuprofen? It's my understanding that this is not advised if also taking an anticoagulant as it increases the risk of bleeding. Best to check with legitimate sources such as the NHS website etc.

[Staffsgirl in reply to mrsg46]

I agree. When I went on an anticoagulant I was warned never to take ibuprofen. I think this is normal advice.

[Terriersgalore in reply to mrsg46]

My understanding too. I have AF, and Osteoarthritis and would love to take some Ibuprofen (because I know they really do work), but have been told my my doctors that I should not take Ibuprofen with the meds I take for the AF and BP.

[fairgo45 in reply to Byke]

I'm also in permanent afib and my cardiologist has told me that presently there is nothing else that can be done except an anticoagulant and in my case diltiazam. My heart rate is on the low side but he said that's better than a high rate when in afib.

I've had it a long time now and take a what will be will be attitude

[Tapanac in reply to Byke]

Goodness both apixaban and ibuprofen?!?!?? Sorry to be a worry pots, but it is known that if on anticoagulants then ibuprofen, aspirin, or others like that shouldn’t be taken at the same time.

I think your hubby should be checked on that.

All the best

[jd2004 in reply to Tapanac]

Reading Ibuprofen comments: I have AF which is controlled at the moment ( never take it for granted though) and under medical supervision I’m prescribed Naproxen for arthritic pain. Also on Apixaban.

[Tapanac in reply to jd2004]

Hope you feel better soon x

[Ppiman in reply to jd2004]

From what I have read, these things are always a balance between need and risk. Doctors know well about this and use their experience to help us best. What seems to be the case is that what we read on the internet is often different from a doctor's actual experience.

Steve

[Buzby62]

Not having enough information explained is common unfortunately, that’s why this forum and the AF Association website are so helpful.

Their contact information is on this link healthunlocked.com/afassoci... and have a patient services team there to help you . 01789 867502 is the number.

Here is a link to all the reading material heartrhythmalliance.org/afa...

I would start with the AF fact file and the AF and you information sheets.

Best wishes

[Byke in reply to Buzby62]

Thanks for this,it’s very helpful .I will definitely look at the link,

[Myya in reply to Byke]

My GP and the pharmacist advised me the only pain pill I can take is Tylenol, I have permenant AF and take metoprolol and eliquis

[Spiritji]

I have had what they call permanent Afib for about 20 years.......it seems easier than what people with other kinds of Afib go through as I don't have attacks......so things are steady and I don't worry much about it.......take low doses of Diltiazen and Pradaxa,. If your husband feels it at night in bed then start sleeping on the right hand side and it will calm and then can switch to the left side. I learned about sleeping on the RH side from online groups........the cardiologists don't seem to know about it!!! It been pretty mellow to be honest

[Mcgandy in reply to Spiritji]

I was told to sleep on my RHS by an arrhythmia nurse, so it's good medical advice.

[opal11uk]

I was once told by my cardiologist that perm. A/F was easier to treat than my P/A/F and I know that a lot of people live with it but further investigation should take place initially to ascertain exactly what the problem is and by a cardiologist not GP

[Mcgandy]

Absolutely. AF should be checked preferably by a cardiologist and an echocardiogram to look at ventricular function.

[Ppiman]

Your own experience, similar to my own in length, likely guides you to the same answer I could give. I'd say, from what I have been told and from the few I know with AF, that he shouldn't be worrying, although anxiety is a normal part of this condition as any illness involving the heart sends off all kinds of nerve impulses here and there. I presume any anticoagulation needs have been taken care of?

The top of the heart, the atrium, is what is involved, with its left side now quivering rather than pumping. Its effect on the much more important part below, the two ventricles, is, in your husband's case (as in most and given his GP's response) not in any way endangering his life.

My elderly friend, now 90, has had permanent AF for very many years now without its affecting his health much at all. He is often unaware he has it and until I lend him my Apple Watch to run an ECG, he wouldn't know he had it. My son's colleague is still teaching a little part time at 76, and copes well with his mix of atrial fibrillation and atrial flutter. As I sit here with my cup of tea in bed, my heart is bouncing around with AF going on and off amidst runs of other ectopic beats. I am coping better these days as I become a bit more used to it, but how much I worry varies a great deal according to the symptoms. A fast rate of 150+ is never easy to cope with for anyone.

If I were your husband, I would ask for an echocardiogram to be carried out to determine the overall state of his heart's health and pumping power. Done privately, these are not cheap (around £600), but the urgency will depend upon how he feels in himself, rather than that anything will change for the worse while he waits.

Steve

[JillyBeau in reply to Ppiman]

I had an echo done for £350 (Sussex)

[Ppiman in reply to JillyBeau]

That sounds very good. Did it include the cardiology report also?

Steve

[JillyBeau in reply to Ppiman]

Yes.

[kkatz in reply to JillyBeau]

I had one done Leeds £420 2 years ago.Included report from consultant Still miss that arm &leg but hubby paid half

[CDreamer]

Very good advice above, I would echo all of above, if he feels fine great but having an echocardiogram every couple of years and an annual check up with full bloods is a good idea, if not already in place. Ibuprofen is not normally advised for anyone with AF as it is known to cause AF but if he is in permanent AF and requires anti-inflammatory it may be lesser of two evils but I would check with your doctor about that. In UK it is available as OTC med but in many countries it’s a prescription only drug.

[JOY2THEWORLD49]

Hi

Goodness 4 weeks! That's not good enough.

If an ECG is ordered it should be pronto. Where else could he have one - at the hospital! Yes!

Before I see my cardiologist in the hospital I am weighed, height taken, ECG, BP taken before he sees me.

Permanent means like me AF 24 hours. Usually symptoms aren't so difficult as no start or finish like a car that suddenly bouces into life and then stops.

Once Rapid Heart Rate controlled the only symptom I get is stopping whilst walking, elevation and can't go far.

Do put down your foot and say Dr refer me to the hospital radiology and make it EXTREMELY URGENT.

cherio JOY. 75. (NZ)

[oscarfox49]

Permanent AF does not necessarily mean that you have a high racing pulse and feel as bad as when you used to have episodes of paroxysmal AF and tachycardia. When I was told by my GP and cardiologist I had permanent AF I really thought I was 'better' as I was not really conscious of any symptoms and my pulse rate is controlled well with my beta blockers. It is only when a trace is taken that the arrhythmia becomes immediately evident.

The main symptoms I experience are in fact the nagging fatigue and occasional giddiness and a general sensation of lightheadedness and unable to do anything strenuous.

Of course with constant AF the need for treatment with anticoagulants is even more important.

[Omniscient1]

As you say he seems alright in himself. Many people have (are 'in') AF and don't even know. I was in this camp until it was diagnosed. I never had the paroxysmal kind so never had the trauma associated with that.So pay heed to the advice to anti coagulate if necessary and check if you need rate meds.

[kkatz]

As Bob said permanent AFib is when there is nothing else that can be done & this is agreed.I was in Persistent AF for almost 2 years after 4 years of Paroxysmal and had to fight all the way to get treatment.

I am now 18 months in NSR since ablation which worked even though only given 50% chance of working.

I would not accept the answers such as too old,other comorbidities.I would not settle for slowing down it is just your age.

He needs checking out for heart functions.A single ECG may not catch it.

Surely it must be affecting his life or he wouldn't have checked it.

You can push on Quality of life.

Good luck.

[Sylviep7]

Has he been referred to a cardiologist? The GP should be doing that as a 1st port of call.

[N400033]

My AFIB has progressed to persistent. My cardiologist does not serm that worried about it although he watches my HR closely. Easy to do since i have a pacemaker. For the most part i feel fine, but i went through a period at the beginning where i felt miserable due to shortness of breath, weakness, and fatigue. That ruled out anything strenuous like exercise. And it appears sometimes. I can not feel any flutter, etc at any time as some of you have described.

But a question..i do worry about heart failure with this persistent AFIB. I realize fully what is going on in the left atrium. But it's not clear to me what is happening in the left ventricle. In persistent AFIB, is it being damaged if the HR is kept low?

And does AV node ablation guarantee that there will be no congestive heart failure due to AFIB?

Thanks to forum to help me understand this,

Jodie

[Vonnegut]

He could track it himself if he had a Kardia but you really need the advice of an EP rather than an ordinary GP. And an echocardiogram would be an idea if he hasn’t had one already, to check the condition of his heart. I had one shortly after my diagnosis with the paroxysmal kind.

[dcjack]

Hi,

I have been in permanent Afib for years - ablation didn’t work and after trial and error initially am on the right meds. My cardiologist, an expert in the field told me ‘You won’t die of Afib’ - it’s just getting on the right meds that’s all and then in future you can explore other things like cardio version or ablation - my advice is just keep calm and just carry on 😃

[Cellolady]

I have been in long term persistent AFIB for almost 8 years now. During this time, there have been some things done that temporarily put me into normal sinus rhythm, but nothing lasted. In fact, the most recent procedure only kept me in normal sinus rhythm for about 3 days. I have been fine and live a good life walking 2-4 miles 4-5 days weekly, playing cello with friends, and working part time. I take Xarelto to reduce stroke risk and take diltiazem to control my heart rate and blood pressure. I do more than many others my age (approaching 70) and strive to push myself to do more exercise. I truly believe that getting outside and walking has made a big difference in the quality of my life and health. I also follow a low sodium, heart healthy diet. I hope your spouse is also doing well. We can live good lives even with long term persistent AFIB!

[Byke in reply to Cellolady]

Thank you for this, my hubby goes out walking with the dogs three times a day. He seems ok in himself, your post has given him confidence. Thank you

[BaileyC57]

I have been in permanent AFIB for a couple of years and doing okay! I take a bata blocker called NEBIVOLOL 5MG and doing okay!