Persistent afib

[Swimsyroke]

I thought I was okay now I'm in persistent afib ( since September 2022) but looking at the posts from yesterday's health unlocked (estesbubba post) people are saying it's not good to be in persistent afib as it causes the heart to work harder and then become enlarged and that can lead to heart failure. So I am worried now as I have never been offered any ablation or cardioversion and when I finally saw a cardio nurse in December he said I was better off in persistent afib. Should I therefore be accepting this ( I generally feel well and am on 30 mg edoxaban ( due to low weight) and 3.75 Bisopropol. Would very much welcome people's comments on this.

[mjames1]

I don't know your complete history, but in general, absolutely "No" to the cardio nurse's saying you are better off in persistent. The longer you are in persistent, the less chance you have of getting out of it with any future interventions and at some point it may become permanent.

Why don't you see another ep and get evaluated for either an ablation or anti-arrythmic drugs to get you back into sinus rhythm.

This is not to say that some people aren't better off in persistent/permanent afib, but in most cases that comes after trying and failing the interventions mentioned. In your case, you weren't offered anything. One exception might be if you're in asymptomatic peristent/permanent afib and can go about life normally without any medications other than an AC (thinner).

Jim

[CDreamer]

I think it is very individual. What seems to be lacking is good advice from your Doctor’s. Enlarged heart is not automatic and neither is heart failure, an unfortunate, scary term which just means that your heart is not as efficient as pumping blood around your body as someone in NSR - however many people adjust.

If you are well, active and asymptomatic I wouldn’t be too alarmed as there are many opinions expressed on this forum.

Having said that - At a minimum you should have some sort of regular monitoring - BP, Echocardiogram, bloods.

Many, many people live well in persistent AF as long as heart rate and BP are stable and you are asymptomatic. If you're unhappy with the care you have experienced then seek a second opinion.

Were you ever offered a cardioversion?

[Jonathan_C in reply to CDreamer]

I like this response and had something similar in mind. I live in South Africa where we don't have cardio nurses - we have cardiologists and I assume there is a difference. My first advice would be to speak to a cardiologist rather than a nurse.

I would recommend trying a cardioversion and if offered an ablation going for one too - its really not a major procedure (I have had two).

However, I will finish off with saying that many people (including me) live very active, productive and happy lives in persistent A-fib.

[mav7]

Having said that - At a minimum you should have some sort of regular monitoring - BP, Echocardiogram, bloods.

Many, many people live well in persistent AF as long as heart rate and BP are stable and you are asymptomatic.

Excellent advice by CDreamer

When you see the cardio nurse, is that visit reviewed by a cardiologist or EP ? You may be only seeing the nurse because your condition is stable. Do they schedule you for regular visits ?

Just insure your condition is being monitored as stated by CDreamer, especially with an echocardiogram. And closely monitor your heart rate and BP.

[Swimsyroke in reply to mav7]

Have got a follow up telephone appointment with the Cardio nurse next month and a routine blood test also next month with doctor. Should I be asking for regular echo cardiograms? I haven't been offered a cardioversion or anything else. Heart rate is mainly in the 70s and I think blood pressure is reasonable but not sure about that. I exercise regularly and generally feel quite well but don't push myself. Thanks for your input.

[CDreamer in reply to Swimsyroke]

I would ask for an assessment of your heart structure ie: minimum echocardiogram. It’s about 3 years since I had one however my husband has one annually because of the medication he takes so frequency will vary but most people with AF will have had at least one echocardiogram. Knowing your BP and having that regularly monitored by GP is also important - mine is taken every time I go for a blood test which is every 3 months. Most people with AF and taking anticoagulant may have this done every 6 months or every 12 months. My BP hardly ever varies nowadays but I suffered from very low BP for much of my life but high BP is more of a concern to doctors - low BP tends to be more symptomatic. Ideal BP is 120/80 and I’m usually in that ball park.

If your BP is routinely above 135-140 systolic you may want to discuss how you might control BP but it sounds as though you are doing really well and hopefully you have nothing too much to worry about. Hope that helps.

[Swimsyroke in reply to CDreamer]

Thanks cdreamer. Will take all that onboard

[Hidden in reply to CDreamer]

Morning CD ............ not really related to this post but just picking up on something in your reply about BP ...... with medication mine is around 133 to 137, trending closer to the 133 mark - diastolic is constant at around 74 to 78. What I wanted to ask is your thoughts on cold weather causing an increase in BP have you come across any evidence that this is so. Just askin' away here.

Anyone else got thoughts on that.

Cheers,

John

[CDreamer in reply to Hidden]

Interesting one John - I haven’t seen anything about cold weather but I have about cold water shock so if you experience an increase in both HR and BP in cold weather it could be because surface capillaries close creating resistance and so increasing HR in & BP? Just theorising. When diving I always got divers response and my mind had to fight it until I got to about 5m - about 30sec-1min - then everything settled. On a really, really cold day when working outside if anyone had cold hands we used to get them to plunge them into iced over water barrel, breaking the ice of course first! They never had cold hands for the rest of the day. As we age though our circulation isn’t that of a 20 year old and I find many of my friends really struggle in cold weather.

[Hidden in reply to CDreamer]

Thanks CD ..... I think you and Trigeminyblue are running along similar lines. Year on year I do find the cold of winter very very challenging - very difficult to deal with which probably doesn't help the BP. But then I've spent a very large part of my life in New South Wales and other Australian States so heat and humidity is for me much eadier to deal with.

Thanks again.

John

[Trigeminyblue in reply to Hidden]

Hi John, colder weather/conditions can cause BP to rise as it induces constriction of peripheral blood vessels- less room for blood volume to be so under more pressure. Opposite thing happens in warm/hot weather. Chris

[Hidden in reply to Trigeminyblue]

Thank you Trigeminyblue, thats what I had heard .....sort of anecdotal evidence. Just curious 'cos I can see this pattern emerging in my year on year BP readings.

John

[mav7 in reply to Swimsyroke]

Your heart rate is excellent May be why they schedule you only to see a nurse.

I have permanent AFib and receive an echocardiogram every 2 years. So far they are normal. Should an issue be seen I am sure would be more often.

Blood test semi to annual to monitor medications effect if any on kidney, thyroid, liver.

[Desanthony in reply to Swimsyroke]

Have you ever seen a cardiologist or electrophysiologist?

[Moongold7]

Sounds like you're not receiving thorough or sufficient advice. As I've commented earlier, if you go to YouTube and view Dr Sanjay Gupta's videos, he is in the UK (York Cardiology). I found Sanjay after my diagnosis of frightening AF about 12 months ago and am so grateful I did. He's an excellent, professional and helpful Consultant Cardiologist and in his videos he provides information and explanations that calm the anxieties and fears that come from heart problems and issues. He also offers online consults if you can't get to see him in the flesh! His email address and I think phone number are provided on his YouTube channel as well. I've just re-found the link you can click on or copy and paste into your YouTube search box -

youtube.com/@YorkCardiology

I'm in Australia and plan to arrange an online consult with Sanjay soon. I would rather pay someone I believe truly has patients' welfare at heart and is educated to the extent he is, than keep on shelling out money on doctors who truly do not seem to know a lot, or care.

[Tangalle in reply to Moongold7]

Hello, agree with Moongold about Sanjay Gupta great videos. Having had a very distressing time for more than a year with an NHS consultant I decided to get a second opinion privately. After a fair amount of research I found Sanjay. I started with a video call and a few nights later travelled 150 miles to York for a consultation and echocardiogram.

Sanjay is the most lovely caring man, excellent cardiologist and took away all my fears and anxieties. He listens and explains everything. To him, quality of life is paramount and I think that is what we all strive for when living with AF.

[Billblue in reply to Moongold7]

you are right about Sanjay see his video on Blood Pressure it’s excellent

[cuore]

My international EP said that if I had not had my first ablation at the six months persistent stage ( I have had three) and not any longer, I never would have been able to get back to sinus rhythm because I was one of his most complicated cases. My third ablation was May, 2019. I have been enjoying normal sinus rhythm since then granted I do have to take medication since I was so far gone persistent. So, it is a choice you make whether to get the proper help to get back to sinus rhythm or choose to proceed to permanent.

[mwcf in reply to cuore]

Cuore,

Is your international EP Pr Jais ?

EDIT - just read your response (3 days ago) to a post of mine from 3 months ago.

Yes we do share the same EP !

I just had my second ablation (for persAF) with Pr Jais on 03/01/23 (the Bordeaux team's Marshall PLAN ablation). Most of it done with PFA too (far safer for posterior of the LA which is very close to the oesophagus). In NSR since and hoping to stay that way !

I think I once PM'd you but didn't hear back from you - but now I see why - i.e. you haven't visited this forum for some time. Would you be OK with the idea of sharing our experiences via PM ?

Cheers,

Mike

[cuore in reply to mwcf]

Absolutely. Also, I did have ethanol infusion of the Vein of Marshall back in November 2017 which, at that time, the technique had been in use by the Bordeaux group for only four months. It was for perimitral atrial flutter (if I remember correctly). At the time Pulsed Field Ablation had not been developed. So, your outcome should be great.

[BobD Volunteer]

Any and all treatment for AF is only ever for quality of life. There is no difference in outcome provided that rate is well controlled and you are anticoagulated for stroke prevention where appropriate. This was explaiend to me by Prof Richard Schilling, one of London's top EPs some years ago. If you are asymptomatic and controlled why risk a procedure. Even for me as a great fan of ablation (had four) this makes sense.

[Rainfern]

Acceptance is a very different thing to having the expertise and support to make an informed choice. And your cardio nurse, with the very best of intentions, is unlikely to provide this. The GP and registrar who first diagnosed my AF (paroxysmal swiftly progressing to persistent) both indicated this was something age related I could learn to live with - I was only referred to a cardiologist on my insistence. Acceptance has become far easier for me since having the confidence of a good EP! I have now learned that for many people getting back to sinus rhythm is feasible, though can take time. According to my EP, with persistent AF the procedure they tend to follow these days is first give a cardioversion. Although only temporary you get a good indication from this wether it's worth progressing to ablation. Apparently the success rate with persistent, though lower than paroxysmal, is getting better over time. Good luck Swimsy, I agree with another post here - maybe try for a second opinion?

[JOY2THEWORLD49]

Hi

The most important thing is to be CONTROLLED. That is H/R under 100 at rest.

How you feel is important as well.

I've been left at 187 H/R avg day tested on 24-hr heart monitor. But at night remain 47 and that doesn't change.

All Bisoprolol stopped the pauses at night.

But CCB Calcium Channel Blocker best Diltiazem brought me down from 156 on all Bisoprolol to 77-88 H/R day at rest.

Only other issue is fatigue on exertion.

cheri JOY. 74. (NZ)