Permanent AF?: The day has finally come... - Atrial Fibrillati...

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Permanent AF?

Rhiannonimity1 profile image
47 Replies

The day has finally come where I went to hospital with sudden onset AF to be told that they won’t do anything. I’m to stay on my meds, flecainide and bisoprolol and to go back if I get severe symptoms. They have said a resting heart rate of 130 is fine because I am haemodynamically stable. I am ( still ) on the waiting list for ablation, but these things take so long now. They said I may go back to sinus rhythm or I may not.

In my opinion this seems a very high resting AF heart rate. What do you think please?

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Rhiannonimity1
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47 Replies

Hi there,

I had to check the definition ........ "What is a person's condition called when he/she is hemodynamically stable?

A person's condition would be called Haemodynamically stable when he/she is experiencing a stable blood flow. Haemodynamically stable is a medical term for stable blood flow. It means that the person's heart is pumping blood at a stable rate, and there is a good circulation of blood in the body."

Just a personal view - I would find their response dismissive because stuff is too hard these days. I hold the line that anything outside the range 60 to 100 bpm is an issue that needs to be addressed, particular if that rate is now a regular daily feature. I wonder what your blood pressure is and how it behaves during the day - it will always vary during the day but I'd be curious at the extent of the rises and falls. How big they are and what the trend line is. My BP varies quite a bit ( all our BP's do that) but my trend line is horizontal.

Leading up to my AF diagnosis my BP varied quite a bit but the trend line was falling throughout the day until it bottomed out at around 76/50.

I suppose what I am trying to say is that whilst your flow of blood maybe stable, your heart is still working excessively hard. The Bisoprolol is a drug that is supposed to hold your heart rate steady, mine is in the range of 62 to 67 bpm and I am on 7.5 mg Bisoprolol daily taken at night. I wonder what your Bisoprolol dose is ?

Bisoprolol is supposed to have some properties that assist with Blood Pressure control although I have not had that benefit. I am on other drugs for BP control.

My cynical view of GP practices today is if a patient has a condition that doesn't fall into the CoVid box then its not important. As I say, I think you are being dismissed. What is important is how bloody hard your heart is having to work to achieve this stable blood flow.

Hope this helps, but it is just my cynical take based on life experiences.

John

Paulbounce profile image
Paulbounce in reply to

" As I say, I think you are being dismissed. What is important is how bloody hard your heart is having to work to achieve this stable blood flow"

+1

Paul

Rhiannonimity1 profile image
Rhiannonimity1 in reply to

Thank you John. This was an A and E consultant who dismissed me. I have no experience of this, it just feels wrong .

mav7 profile image
mav7 in reply to Rhiannonimity1

Excellent advice by carneuny, Rhian. Your heart rate needs to be lowered thru medication.

etheral profile image
etheral in reply to Rhiannonimity1

Ìf this happened at any of the hospitals I worked at, the doc Would have been disciplined. Personally, I probably would have cardioverted him in the ED.

dogsneedwalking profile image
dogsneedwalking in reply to

Sorry to hear about your constant AF. I was initially diagnosed with SVT but after cardiology app/heart scan and non responsive to Bisoprolol which ended in me having a Cardioversion last year I was changed to Sotalol which in the main keeps everything under control so far but for the past few weeks my hearts been a bit techy. My BP some days is all over the place from low to high but because of the Sotalol my pulse is never higher than 53 bpm down to 43bpm. Maybe it would be worthwhile asking to get your medication dose looked at/changed. Just a suggestion that's all. Take care.

in reply to dogsneedwalking

Hi dogsneedwalking,

Thanks for that. Certainly I have noticed over the last 6 months or so that my HR is trending lower and lower. From when I was first diagnosed in Jan 2010 to about Feb 2021 I was on 5 mg of Bisoprolol, following a check up my relatively new GP upped it from 5 to 7.5 - can't recall why off hand but I have it somewhere on my laptop. Am considering asking her to drop it back to 5 mg again. I know from experience I function better at around 72 bpm. Very often my overnight HR is down as low as 46, mostly though around 55. Too low for this guy methinks.

John

dogsneedwalking profile image
dogsneedwalking in reply to

Aye I struggle with my HR being so low but guess that's stopping the episodes. My problem was the Adenosine, and everything else they gave me didn't work and that's why I had to be converted - not a pleasant experience but it worked. Hope you feel better soon.

Paulbounce profile image
Paulbounce

Hi Rhian

'In my opinion this seems a very high resting AF heart rate. What do you think please'

I agree - 130 at rest is high. Is it worth discussing with your medic about increasing your dose of Bis ?

You maybe haemodynamically stable but this seems strange to me (I am not a medic). Personally I don't think I would accept that advice and question it. Like I say I'm not a doctor so that's just my take from a personal point of view. There's no way I would accept that though - sorry that's just me but I would question that one.

Good luck.

Paul

Rhiannonimity1 profile image
Rhiannonimity1 in reply to Paulbounce

The problem is that my sinus rhythm resting heart rate is 50 ish, so they can’t increase my meds in case I revert to sinus rhythm. I have tried to get a private consultation with my EP ( different hospital) but their clinics are full til late Feb. I guess I will have to wait. I don’t feel too bad, a bit like I have a chest infection and someone is sitting on my chest.

mav7 profile image
mav7 in reply to Rhiannonimity1

In your original post, you stated your resting HR is 130, but that is when there is an AF episode ?

And when you are in NSR it is in the 50's ?

Finvola profile image
Finvola

Oh that's not helpful for you trying to cope with AF. I wonder if you were told this by A&E or by a cardiologist who knows your history.

Certainly, the advice sounds either dismissive or ill-informed, especially if you have the same distress as I had with AF and a similar heart rate - I just couldn't function. I certainly wouldn't describe 130bpm long term as 'fine'.

I would be inclined to contact either my GP or cardiologist for clarification and perhaps a review of my drugs. You might also be able to get onto the 'cancellation list' for ablation. Best wishes.

Rhiannonimity1 profile image
Rhiannonimity1

Yes that is right. When I am in sinus rhythm my rate is 50 ish. When I go into AF my rate is from 120-150. Usually when I go into AF (21 times in the last 16 years) I go to A and E, get intravenous flecainide or an electro cardio version and revert to sinus. This time they lowered my rate to 130 ish and said “ go home and live with it”. I assume my sinus rate is so low because I’m on 2 x100 mg flecainide daily and 2 x 2.5mg bisoprolol.

jeanjeannie50 profile image
jeanjeannie50 in reply to Rhiannonimity1

How are you feeling with your heart at that rate?

Rhiannonimity1 profile image
Rhiannonimity1 in reply to jeanjeannie50

Hi JeanJeannie. I am trying to relax and sometimes feel ok. Other times my whole body has a low level shake and won’t stop. I haven’t been able to sleep today, because of the shakes. This may be adrenaline or it may just be my heart. I will have to see how I feel over the next few days.

jeanjeannie50 profile image
jeanjeannie50 in reply to Rhiannonimity1

I've had AF for a long time and once I was sent home from a stay in hospital with a pulse rate of 120-130, pending a cardioversion. I was fine so long as I didn't move around and certainly couldn't walk far without feeling totally drained of energy. Is that how you feel? I've never had the shakes you get though. Is your pulse going up and down?

Jean

jeanjeannie50 profile image
jeanjeannie50 in reply to jeanjeannie50

Haven't they put you on a cardioversion waiting list?

Jalia profile image
Jalia

I agree largely with what has been said. I've had a great deal of experience with fast AF and AE and this doesn't sound right.

Paulbounce profile image
Paulbounce

Sorry Rhian but I'm a little confused here. Are you saying your HR is in the 50s when you are in sinus but is now 130 bpm due to being in afib ?

"This time they lowered my rate to 130 ish and said “ go home and live with it”.

Either way I think a rate of 130 is to high if it lasts for say 4 or 5 hours. Personally I would contact your medic - saying 'go home and live with it' is not acceptable IMO.

Paul

saulger profile image
saulger in reply to Paulbounce

Hello Paul. I understood Rhian to say that "in NSR it is 50BPM and in AFib 130-150. At the hospital they steadied it at 130, and it is now constant at 130 with 2 x100 mg flecainide daily and 2 x 2.5mg bisoprolol."

Rhiannonimity1 profile image
Rhiannonimity1 in reply to saulger

Thank you Saulger. That is indeed what I am saying.

snak3eyes profile image
snak3eyes in reply to saulger

2x2.5mg bisoprolol daily isn't that much.did the doctor suggest increasing the dose while in AFib ? how is your blood pressure ?

talk with your doctor about the dosage, see if there are any adjustments that can be made to make you feel better.

saulger profile image
saulger in reply to snak3eyes

snak3eyes, I think that you were replying to Rhiannonimity1 ?My BP is just 110/60 and lower, HR 53 BPM resting.

Couldn't exist on 2.5mg Bisoprolol x 2. I was lifeless at 1.25mg x 1.

All the best. Saul

Paulbounce profile image
Paulbounce in reply to saulger

Ty Saulger.

Paul

I agree with the others that the hospital's assessment sounds very dubious indeed. Initially, a conversation with a GP might be useful- even though he is not a specialist, his opinion would be worth having. I hope you manage to get the situation resolved.

I would be on to my GP. I would also wonder about calling 111 and telling them you feel dreadful. They may direct you back to A&E but in my experience they contact A&E and you are separately tracked when you arrive. You will almost certainly see a different on call cardiologist and can get another opinion. I would also ring your EP Secretary and your arrhythmia nurse (every unit usually has one) and leave a message querying this. Good luck.

KMRobbo profile image
KMRobbo

I was always told by my local hospital anything above 130 go to hospital. So you are on the borderline. Personally I think that is too high for resting , but I am not medically qualified. HOW HIGH does it go when moving around?

Are you in permanent AFib already?

I would object if you were not because AFib begets AFib, so eventually you will be.

Haemodynamically stable or not is not a criteria I gave cone across for AFib.

Can you ask for a second opinion?

Rhiannonimity1 profile image
Rhiannonimity1 in reply to KMRobbo

Hi Robbo. I don’t know how high it goes because this only happened on Tuesday night and I don’t have anything to track it. The beats are too light to track just by taking my pulse and my Fitbit doesn’t seem to work. I did ask the Dr if I could exercise and he said ofcourse I should. Based on everyone’s advice - thankyou- I have written to my EP’s secretary with my current info and asked her to tell him. I have an appointment with him on 1st Feb which is the earliest I can get.Re - are you in permanent AFib? I don’t know . Historically I have had 20 episodes of AF, average duration 5 hours, all chemically or dccv in hospital. I have never just spontaneously converted myself, so I don’t know whether I am now permanent or not.

Rhiannonimity1 profile image
Rhiannonimity1 in reply to Rhiannonimity1

Sorry, I should have said i may be in Persistent AF - not Permanent.

MummyLuv profile image
MummyLuv

Goodness how dismissive ‘go home and live with it’. The A&E doc should refer you to a cardiologist and they will consider the best approach to managing your afib. Perhaps you have one as you are on meds?

If cardioversions don’t hold them your cardiologist/EP will likely recommend a Catheter ablation. These have high success rates where you are in paroxysmal afib (sounds like you are as you can still convert to NSR). Only when you are constantly in afib and never convert to NSR are you then persistent. Permanent is where nothing else can be done and you are managed on meds alone but still in afib. I don’t think you sound in permanent, there are many interventions that can be tried :) Even when you get to persistent/long term persistent there are surgical techniques that can help. I wasn’t diagnosed until already in afib all the time (persistent) and have had a catheter ablation and now looking at surgery.

Jaws66 profile image
Jaws66

If you're not happy, go back to them and ask questions ! Worrying about it won't be doing you any good. After all, you're the customer, and the customer is always right. At the very least you'll get an explanation that will help you cope.

130 is high, but AFAIK although your heart is working less efficiently it will still be pushing the same amount of blood around overall, so working faster but less hard.

CDreamer profile image
CDreamer

Hi Rhiannon - harsh words from A&E but as I personally have never found any help from A&E, even when not hemodynamically stable I am not surprised at the dismissive nature of your experience, doesn’t make it helpful or correct though. Had a few of that kind of encounter.

What they are really saying is A&E is not the place to come when you are in AF unless you have chest pain and/or other symptoms which suggest that something which requires immediate attention is going on and it seems they did screen you for that.

Please go and get advice from your cardiologist or EP who’s list you are on for ablation for advice and explain your concerns. And keep persisting. Ring their secretary - you will find a list of all the secretary numbers on your hospital website. What I learned was that to get the attention you need to become a pest, of the nicest sort of course!

As to living with high HR - I found that I could quite happily live with rate UP to 130 but as soon as it got over 150 for any length of time it was just too exhausting. But then my resting HR was often in the 70/80’s anyway so not that much of a difference. What is ‘too’ high for one person is not for another so I would go on is how symptomatic you feel. I have to say it’s a big difference from 50-130 so can well understand that it feels horrible but I preferred to live with high rate as was I couldn’t tolerate with was any of the rate control drugs. Now once you get 180-200+ for any length of time, then they take you seriously because that is dangerous.

If your Flecainide & Bisoprolol are not holding the AF now your specialist needs to know so write to them, phone the secretary asking for a review.

It seems that being in AF per se is not the difficulty unless you are very symptomatic and you are saying you are so therefore you need help and support - but you aren’t going to get it from A&E unfortunately.

Hope you get to talk or see your specialist very soon.

Best wishes - CD.

Rhiannonimity1 profile image
Rhiannonimity1

Thank you for taking the time to reply. I suppose after 16 years with PAF I knew that at some point a Dr would send me home under ‘ rate control’. I do trust my NHS EP and fortunately I can access him privately. I will just have to wait until he gets back to me and trust what he says. In many ways having persistent AF will increase my QOL significantly because I have been tailoring my life to avoid my AF triggers to such an extent that I hardly leave the house - also Covid has had an impact too.

4Pip profile image
4Pip

I agree. Your being dismissed . I was being dismissed and it took me about three months for that to dawn on me .I then sat down and wrote a letter and took it into my Gp and read it out. My consultant had said “ Oh I thought you would be dead by then “. My gp listened and wrote a letter to get a new consultant The new consultant was an electrophysist who said I could have an ablation and I got mine 7 weeks ago. They wanted my heart rate brr we low 110 Now I’m in NSR and all is well But I realise if you don’t fight when you feel something is wrong you’ll regret it. Even mentally I feel better because I fought for myself and the consultant was wrong. I’d also been told that I’d be fine with my HR 160 to 110. No no no you feel awful with that. Good luck

Jajarunner profile image
Jajarunner

I was left in that state for 5.5 weeks with HR of around 90 (about double my normal) , I could barely walk. I was forced to go private and saw a EP from Papworth hospital who upped my case to urgent and got me a cardioversion within four weeks and an ablation a month after that, all during Covid first lockdown and all via NHS ( I was already on waiting list for ablation). Is this possible for you? It cost about £250. Otherwise do you have a cardiologist, if so send emails/call their secretary to beg for help. Pm me if you like too. Good luck xx

ETHEL103 profile image
ETHEL103

Hi my resting hr rate is also over 110 even when resting I to am on a never ending list for ablation.Only on verapimil and apixabanGreat isn't it?

616foxy profile image
616foxy

I have terrible AF , predominantly at rest. My heart rate drops to around45. I’ve also been told by the cardiologist that he doesn’t want to do anything, if it get worse to get in touch. I find it very distressing when it happens, I’m told the risk being a strok

snak3eyes profile image
snak3eyes in reply to 616foxy

are you on anticoagulant ?

616foxy profile image
616foxy in reply to snak3eyes

I think the apixiban does that

kkatz profile image
kkatz

I went into Persistent AF almost a year ago.At first high rates 130 - 150.I just didn't do anything cos I couldn't .But if I rested felt ok.Hubby was great. I attended A& E for another reason and HR was around 180 but settled to 160 within 15 mins.They were concerned but I said I was awaiting AFib referral & I came for my head not my heart. Although I am not an anxious person I knew the really high initial reading was anxiety.Almost admitted me.Even had the pre admissions COVID tests.HR was 130 when I went home.You see I knew how to cope with those rates.Fortunately I now have lower rates between 85 to 95 resting & up to 125 with excercise.It is scary I know but try not to get too anxious.I had to really battle for 7 months to not be dismissed and I am still waiting for promised Cardioversion.I got lots of good info from links provided by AF association.Maybe someone can help you with them.I read everything several times & went armed with questions and why I should be offered treatment.Maybe this will help you.

mav7 profile image
mav7 in reply to kkatz

Did they not prescribe medication to lower your heart rate ?

kkatz profile image
kkatz in reply to mav7

No but perfectly happy with that.I had had 4 years of Paroxysmal and I believed that The AZ jab caused the change. So I was hoping to revert naturally & I was awaiting appointment with the Aryrthmia Department.I wouldn't have wanted medication as I had only been taking Adizem previously.I wanted to see if I could revert in any other way.I could handle 130-140 with minimum activity.That really frustrated me.

The heart rate did reduce gradually over 1-2 weeks but went up with excercise .I had to pace myself on walks .At first would go up to 125 within 10-15 mins walk & I couldn't continue.Now a year later I usually do a couple of miles but can't do inclines.Usually rest when I get breathless hr about 120 & rest till down to 95 . Usually about 5 mins.Hoping for a Cardioversion within a couple of months.

tmarler profile image
tmarler

Ablation didn’t work for me. But I consider the drug Dofetilide a miracle drug. I tried everything this is the only option that actually worked.

Barb1 profile image
Barb1

My resting heart rate was around that with permanent AF and that is why I was given a Pace and Ablate otherwise I could have gone into heart failure. The anesthetist said that it was as if I was running a marathon all the time as I was never in SR. That was after all meds, numerous CV's and 5 ablations.

Hello and I would not accept that response myself. I am in permanent afib & so is my husband. Our resting heart rates are 76ish. I take verapmil. I dont know anything about your med so can't advise. But, I would be a very "squeaky wheel" & get better care. How do you feel? I hope you are ok & I am not saying to panic or anything of that sort. You already doubt their response, trust your instinct.Take care!

Cristal

Batigol profile image
Batigol

Have you tried another hospital?I have a local AnE 20 mins away that when my wife presented with afib (130 150 bpm) have drugged her up feeling awful and made her wait in that state for 1.5 months for cardioversion. They have done this twice. The next hospital,large regional teaching trauma hospital, 1 hour away just cardiovert her the same day.

She has had afib 10 times and unless she is fainting we will do anything we can to get to the large, rather, than local hospital, because they seem to have a more pragmatic approach to afib. They realise that drugs do not convert her in all but 1 episode, so why bother trying them leaving her in a bad state.

Goldfish7 profile image
Goldfish7

My not very good local hospital wouldn't let me out (in 7 days) until they got my resting heart rate below 110 (sometimes goes over). Luckily the other hospital with my specialist team have angiogrammed me, are about to cardiovert me and have put me on the 'long list' for ablation. Sounds like your hospital are not acting in your best interests. I'm already suffering a thickening of my heart wall thanks to my rapid heart ratel.

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