Advice regarding setting of expectati... - Atrial Fibrillati...

Atrial Fibrillation Support

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Advice regarding setting of expectations ahead of cardiology appointment would be appreciated.

Hallane profile image
21 Replies

AF since March 23. Currently only really experiencing breathlessness on inclines.

No experience of HR over 100 (as far as I know).

Devices confirm persistent AF since March.

Echo revealed a few mild heart failure issues and recommended cardiology review, which is due in a couple of weeks.

My question really arises because I see so many of you have a substantial amount of treatment for AF particularly, ablations, cardioversion etc.

Even though I read the posts and replies thoroughly I haven’t really got a good grasp of what if anything will be suggested for me.

Hopefully I’m not leading the witness too much, but is someone in my situation, with fairly low symptoms and HR below 100 unlikely to be a candidate for cardioversion or ablation or pacemaker.

The only definite I know is that I am in persistent AF.

Thanks for any thoughts from anyone who can identify with my situation or similar.

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Hallane
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21 Replies
Czech_Mate profile image
Czech_Mate

Hi thereI'm no expert but here's my story. Might be of interest.

Similar to you but I don't think any 2 people on here are the same. ( Repeat after me: "we are all individuals!" 😉).

I'm male, 68, arrhythmias started some time early 2022, the main thing I noticed was getting dizzy and breathless when going upstairs. My GP here (Czech Republic) sent me to a cardiologist who after the usual tests advised a pacemaker immediately to give me a minimum heart rate of 60bpm as overnight there were gaps of up to 5secs between heart beats. Since then I've been on Metropolol (beta blockers) and Apixiban (anticoagulant). Apparently I am in AFib all the time, but although the heart beats are all over the place: missing, extra, it seems pretty random to me; if I feel my pulse it doesn't seem that my heart rate goes up. In fact when walking uphill or upstairs or when I start moving after sitting down for a while I get out of breath and a bit dizzy because I think my heart doesn't speed up a bit when I need more oxygen. However with such irregularity it's hard to define what the heart rate is. At my last check up in September the cardiologist told me that he doesn't recommend cardioversion or ablation for me as although I have Afib all the time, it is not serious enough to warrant the discomfort and risk of these treatments.

Sorry for waffling, I intended to be shorter. Good luck. CM

Hallane profile image
Hallane in reply toCzech_Mate

Many thanks for your reply. Of course we are all different 😀 but your reply did hit some similarities. I also have gaps of 4 or 5 seconds, but most of the time.

I have a Kardia and I can see I have a few rapid beats then a wait for the next lot.

My GP was a little hesitant in prescribing Bisoprolol again because my HR went from around 65 to around 50. Strangely with Nebivilol it’s increased my HR to around 75

Did you end up having a pacemaker?

Also what’s your view of not being offered cardioversion or ablation?

H

Czech_Mate profile image
Czech_Mate in reply toHallane

Yes, the pacemaker went in straight away. I've had 3 routine checks and I'm told it's working well. I see it as insurance against any over slowing of the heart beat from the Metropolol, which the cardiologist says is necessary to keep my BP down.

A lot of what has been involved for me is coming to terms with my situation psychologically, which as I see that although I'm in afib all the time, it's nowhere near as bad as the attacks of it that some people endure. Yes, I've had to adjust, but my quality of life isn't bad. I'm independent, which is important for me and I keep busy, but at a slower rate than before.

I think about the future and the possibility of heart failure or loss of cognitive abilities, but try not to worry about it and live in the present.

Cheers CM

Hallane profile image
Hallane in reply toCzech_Mate

Thanks CM. Did you get offered an angiogram? A neighbour of mine went through the whole process of AF management and yet after months of reviews etc he was offered an angiogram as he was still a little breathless on hills. To his great surprise he needed a triple bypass which he is now recovering from.

H

Czech_Mate profile image
Czech_Mate in reply toHallane

I haven't had angiogram. I'm told that the plumbing is OK, it's purely an electrical problem. As far as I'm aware an angiogram brings risks of its own and would be considered only if symptoms such as severe chest pain suggest problems with blood vessels to the heart.

At the moment my concern is to see if I can get off the Metaprolol.

CM

BobD profile image
BobDVolunteer

Any and all treaatment for AF is only ever for qualiity of life. In ther words symptom control. Provided that rate is controlled (under 100) adn the patint anticoagulated for stroke prevention the end results is no different regardless of what treatment is given. (rate or rhythm control)

Any procedure such as cardioversion or ablation does have some risk so for an asymptomatic patient with well controlled symptoms it is unlikely that alternative treatments would be offered. As my cardiologist told me "we don't treat HRs of between 60 and 100."

Hallane profile image
Hallane in reply toBobD

Thanks for your reply. Your cardiologist was obviously very direct there.

My only experience from a cardiologist healthcare professional was that for my situation not to give up on pressing for a cardioversion as if successful would prevent damage to the heart caused by Afib

Rainfern profile image
Rainfern in reply toBobD

But they treated me Bob, with HR 60 to 100. Admittedly symptomatic but liveable with. The cardioversions suggested that there was potential for further procedures to work even though I stayed in NSR for only a week or two. And so I was offered an ablation. If ablations don’t keep a lot of folk out of Afib then what’s the point? And surely those risks we all live with in constant Afib, even though greatly reduced with anticoagulants, (stroke, dementia, heart disease) are as great if not greater than the risks associated with the ablation procedure itself? If this was not the case I’m not sure the NHS would be taking on increasing numbers of clients for ablation and buying into private practice to keep waiting lists down. According to my EP this is a cheaper route for the NHS in the longer term. So in the end it’s a personal choice, but I do think people need to be aware there are risks both in going down the procedure/surgical route and in leaving the Afib to progress over time.

Hallane profile image
Hallane in reply toRainfern

That’s interesting. May I ask what your symptoms were Rainfern?

Rainfern profile image
Rainfern in reply toHallane

Breathlessness on hills, a drop in energy and fitness levels, tiredness, tightness and sometimes pain in chest, feeling feint when standing in one spot, acute awareness of heart rate changes and sensations of the heart not running normally (flipping, rumbling sensations, bumping about) - particularly at night when sleep was affected, having to give up or greatly reduce activities such as long walks and time on my allotment, having less energy in my caring roles for daughter with MS and husband with CFS.

The only meds beside anticoagulant were occasional propranolol when the HR started climbing - an old fashioned beta blocker. I can’t take bisoprolol as my BP is a healthy low. Then amiodorone for a month or two before the second cardioversion because it sometimes makes a difference. It didn’t. And finally digoxin while I waited for the ablation and it did help the symptoms, now off everything except anticoagulant. But I’m pushing fate here ….!!

Paulbounce profile image
Paulbounce

Hi Hallane.

What to say? Personally, I would wack in a cardioversion. Now I'm not a Doctor so this is just from my point of view.

That's great that your HR is below 100 BPM. Are you sure you are permanently afib? I'm not so convinced.

Copy and paste below.

Cheers Paul

From what you've described, you have been diagnosed with persistent atrial fibrillation (AF) since March, with mild symptoms such as breathlessness on inclines. You haven't experienced a heart rate over 100 bpm, at least to your knowledge. Additionally, an echo revealed mild heart failure issues, and you have a cardiology review scheduled in a couple of weeks.

The decision to pursue treatments like cardioversion, ablation, or pacemaker implantation depends on several factors, including the severity of your symptoms, the underlying cause of your AF, your overall health, and your doctor's recommendation. Generally, these interventions are considered when medications alone are insufficient in managing symptoms or controlling the heart rate.

Given your relatively low symptoms and heart rate below 100 bpm, your healthcare provider may continue with a conservative approach, such as medication management, to control your AF. However, it's crucial to discuss your concerns and treatment options explicitly with your cardiologist during your upcoming appointment. They will be able to assess your specific situation and provide guidance tailored to your needs.

Remember, every case of AF is unique, so what works for one person might not be suitable for another. Trust your healthcare provider's expertise and work closely with them to find the most appropriate treatment plan for your condition.

Hallane profile image
Hallane in reply toPaulbounce

Thanks for your reply. I get that a conservative approach might be recommended and I certainly don’t want risky treatments for the sake of it. I was told “off the record” by a cardiologist friend in Australia to press for a cardioversion as it may work and is low risk. Sounds like that’s against NICE guidelines?

H

Paulbounce profile image
Paulbounce in reply toHallane

Hi Hallane. A CV will (might and might not) work for a limed period of time. I had 2 years from my last one.

99 percent of the time it smashes it. However, it doesn't work all the time. There one forum memeber on here who had a bad time of it after a CV.

As for NICE guidelines ? Hmmm - let me think about that one.

Cheers Paul

Desanthony profile image
Desanthony in reply toHallane

I think it would be worth trying a cardioversion then you will know if an ablation could work for you and if this did work then it could be that you avoid taking some medication long term. I have had 3 cardioversions all of which were successful. - Longest lasted 15 months. Unfortunately missed out on my ablation during Covid and now my heart has remodelled itself so no longer being offered either cardioversion or ablation. I am now in low rate permanent AF. I was offered cardioversions and ablation because rate control medication didn't agree with me ( infact made me feel worse than the AF) so am only on anticoagulant. It would be best if you ask for a referral to an EP. I was so glad when my cardio agreed to refer me - though I paid for my initial consultation with him as wait was going to be a long time.

Buffafly profile image
Buffafly

You have been referred because you have symptoms of heart failure, so either your AF is affecting your heart’s efficiency or something else is. That’s for the cardiologist to find out and it should be treated to avoid long term damage. It’s possible your heart is sometimes running faster or slower than you are aware of and a monitor (for a few days preferably) would reveal that. A CV should show whether you can sustain Normal Sinus Rhythm and if so opens the door to other options.

Finally, if the cardiologist goes for the line of minimal treatment I would pay to see an EP if you can’t get referred and if you are able. Hopefully you know the difference between a cardiologist and an EP, basically plumber/electrician but many cardiologists specialise in arrhythmias without doing the exciting bit!

Hello Hallane, everything which has been said about treating asymptomatic AF is correct but circumstances can change and naturally you want to be sure that you make the most of the opportunity to establish what might be the best treatment plan for you. Although you say your heart rate rarely exceeds 100 bpm, this is right at the top of the normal range and as we age, things change. So I guess the first thing to ask is if your current (borderline) heart rare is likely to increase over time and what the consequences of not having treatment likely to be in terms of say, possible heart failure.

Generally, someone with persistent AF would be offered a cardioversion to see whether or not you are able to return to sinus rhythm and if if works, whether or not you feel significantly better for being in rhythm. The decision then is, will it be better to remain medicated or would you be better off having an ablation. Not easy decisions to make but here in the UK, the pressures are such that EP’s generally only offer an ablation if they are confident that it’s the right course of treatment for you. So no easy answers I’m afraid, but let us know how you get on and maybe we can help you when it comes to weighing up the options…..

DevonHubby1 profile image
DevonHubby1

Hi, Wife has been in persistent AF since March. She has suffered ftom paroxymal AF for years. Switched to Nebivolol in May which has kept her HR below 90 other than when she us exercising but still suffers with shortness of breath on stairs and inclines.

Had cardioversion in September which failed. Just had follow up yesterday at hospital with the arithymia nurse and other than trying ammiodrone before another cardioversion they suggest staying in AF may be best course. Ammiodrone they say is a risky drug with side effects, some of which can be irreversible. Even if cardioversion then does work, it won't last. Its my wife's choice but they won't put her on the waiting list for ammiodrone / cardioversion unless she asks. She's currently mulling it over but likely to just stay in AF.

I asked about Mini maze but was told it, or any other surgical procedure, would only be offered if wife gets BMI below 30.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

I was diagnosed with AF Rapid and Persistent with a Stroke Embollic in Sept 2019.

4 days into my hospital stay was a carotid arteries scan showing a shadow on my Thyroid. Biospy positive to papillary thyroid cancer.

No followup post stroke on Metoprolol which I declined because of previous experience of it in 2009.

I proved and struggled with this med with breathlessness on any exertion and 187 average H/R Day.

At 1 year 4 mths my demand to see a H/Specialist lead me to have an ECHo, 24-hr monitor and ECG. I was changed to Bisoprolol as my med.

I had my Thyroidectomy and 12 right lymph nodes removed (2 infected).

I have had 3 x yearly clear neck scans. Low Risk I declined RAi and TSh suppression.

Bisoprolol was not a good rate reducer as I was put up and up to 10mg.

H/R Day was 156.

My Locum wanted me controlled so on her advice I saw her recommended H/Specialist under private.

He introduced CCB Diltiazem 180mg (was too high) changed to 120mg. It was pretty drastic reducing me down 105 bpm in 2 hours. 120mg brought me down to 88-96 then 60s a year on it.

So my meds are to control.

120 Diltiazem AM to control H/Rate Day

2.5mg Bisoprolol PM to control BP 24 hours.

My profile now is ..110-130 with 69 and 60s H/R Day I always stay at 47 average at night regardless of meds.

The Echo will show your Specialist the state of the structure of your Heart. Surgery is not given if your structure of your heart is abnormal. Mine has a dilated left ventricle and right regurglating. I cannot have the 3 - cardioversion, ablation or anti-arrhymic drug.

But the main thing is that my BP and H/R are controlled. I have just had my Right Shoulder repaired. Anaesthetists wil not operate if H/R is over 100.

I itterate CONTROL.

cheri JOY 74. (NZ)

etheral profile image
etheral

Hi, as I see it, the biggest possible long term problemwould be heart failure. At some point this could become irreversible. Aggressiveness of treatment would depend on results of Echocardiagram, CXR which would show whether or not you presently have fluid backing up into your lungs and other factors

determining the cause and severity of the CHF. Possible treatments would include all that have mentioned by other posters. If an interventionist approach (CV or Ablation) is not recommended by your Cardiologist and Electrophysiologist, I would hope you receive maximum treatment for the CHF, such as Entresto, possible diuretics and other indicated drugs. Best of luck

etheral

Ppiman profile image
Ppiman

I’m a worrier and find myself asking less than I ought to have done whenever I see a specialist. Any questions I had in mind in that anxious period beforehand seem always to drift away in the euphoria of being given a reasonable bill of health rather than the expected death sentence! 😳

But, if I had the presence of mind, I would be asking what the longer term likelihood of my heart staying healthy is and what can be done to keep it going into ripe old age. For instance, I have left bundle branch block and I was given a daily blood pressure tablet called losartan as this was said to be “cardio-protective” even though my BP is normal.

I have an elderly friend, now 90 with permanent AF of very many years standing, and he’s surprisingly well with no treatment for his heart at all (he takes warfarin for the stroke risk).

Steve

Gloriousgarden profile image
Gloriousgarden

Thanks for starting this thread as I have found it really useful. Currently in a similar position to you. First diagnosed with AF four years ago after an A and E visit (flip flopping/pulse rate 180). Been on bisopropol and apixiban since and only aware of a couple of incidents since which have quickly reverted. Longer one back in April so referred to cardiologist and have telephone appointment finally at the end of this month! Been in persistent AF for nearly a month now though unaware for much of the time. Pulse rate generally a 70-90 but 100-120 after walking or taking the stairs but comes back down quite quickly. I have also been thinking of what to say/ask for in the cardiologist conversation and the responses to your original post have been very useful. Only test I have had since April has been 24 hour Holter and a blood test last month at hospital to check I hadn’t had a heart attack! What tests should I expect the cardiologist to be suggesting at this point to plan a route forward please? Over the past three years I have had both knees replaced privately (pay as you go in UK) but think that this is not an option this time as the cost of ablations is eye wateringly expensive with no guarantee of success. Your opinions, experience and wisdom would be appreciated.

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