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Long term AF with no palpitations, what are my best options.

Morg4 profile image
17 Replies

I was diagnosed with A F 6 years ago, I have never had any palpitations or strange episodes but fatigue and shortage of breath is my main concern, this is getting steadily worse over the years.

I had a cardio version five years ago that lasted 3 days, the AF has been permanent for the last 4 years, I was on Bisoprolol but found out it was causing a cough, this was only found out after exhaustive tests on my lungs and breathing. I have stopped taking it and my cough has gone.

I am taking Rivaroxaban 20 mg daily.

My consultant did suggest an Abalation 2 years ago but I did not think this was what I wanted after reading the the poor success rates, I now think my consultant has lost interest in me as I only get telephone consultations spaced well apart, with no real advice.

What are my best options going forward? I would welcome any information.

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Morg4
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17 Replies
Desanthony profile image
Desanthony

As you and your consultant have agreed that you are now in permanent AF an annual consultation - mostly done via telephone these days during and since the pandemic is pretty much all we get. I also get to see the cardiac nurses at the hospital every October but haven’t seen a GP, cardiologist or my EP since before the first lockdown just the nurses. I went back into AF after my third successful cardio version which lasted 15 months and missed my chance at an ablation as it was cancelled a few times during the pandemic and last June after scans it was found my heart had “remodelled”itself and so an ablation or further cardioversions would be unlikely to work. I get blood tests every year as I am just on apixaban as any beta blockers make me feel poorly - lethargic, fatigued and breathless so I am much better off without them. I am in low rate AF with heart rate at rest in mid fifties. So don’t use any rate control medication either. If you wish to speak to your consultant then ring his secretary at the hospital and ask for a face to face consultation, or call your cardiac or arrhythmia nurses at the hospital. I really do think that once a year we should at least get checked over by a cardiac or arrhythmia nurses.

Morg4 profile image
Morg4 in reply toDesanthony

Thank you for your advice. It had given me things to think about.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toMorg4

HiThe main thing with Afib is that you are CONTROLLED. BP and H/R controlled.

The only med which did this for me was CCB Calcium Channel Blocker. 180mg Diliazem brought me down 105 H/R day.

So Twinked meds to Diltriazem 120mg am and 2.5mg Bisoprolol pm.

BP 123/72. H/R day 77-88. Night stayed 47 throughout.

CONTROLLED.

In NZ I had no post stroke care. I struggled on Metroprolol, hated it - breathless and tired.

2 years 3 mths I asked for a cardiac specialist. My H/R day was 186.

Changed to Bisoprolol on 10mg brought me down only to 156.

I have listed now BP, H/R controlled on CCB.

I went to a private cardiac specialist under a new locum in my clinic. He was interested. Gave me CCB.

Then rereferred back to public. She monitored me via ECG and 24-hr monitor. She was happy and I never saw her.

Saw a national cardiac specialist was happy.

No to ABLATION. My heart is enlarged according to ECH done 02/21.

He will see me next year.

But what will happen is that if you have problems go see your GP and get them to refer you back to specialist. Yes even in NZ the wait is 6 mths. Get to put URGENT on referral if you are needing urgent help otherwise it is A&E. Or here 111.

cheri. JOY. 73. (NZ)

Murdy1 profile image
Murdy1 in reply toDesanthony

I completely agree with you Desanthony. My Pafib is very much the same as yours. Your contribution here is very helpful to me, thank you! Tom

mav7 profile image
mav7

Hi Morg

Talk to your GP or cardiologist and ask to wear a heart monitor for a certain period. It will tell everything about your heart rhythm. Palpitations and AFib are not always noticed by the individual.

The key is rate control. Need to make sure your heart rate is not excessive.

Morg4 profile image
Morg4 in reply tomav7

Thanks for the advice . I haven’t had my 24 hr monitoring for several years so this could be my next step. My rate is around 80 rest.

mav7 profile image
mav7 in reply toMorg4

Not a bad heart rate with AFib.Mine is the same.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toMorg4

Hi80 at rest is normal.

So it is the AF irregular heart beat.

If it does not worry you forget about it.

People live with AF with only the anti-co.agulant.

cheers JOY. 73. (NZ)

BobD profile image
BobDVolunteer

Since any and all treatment for AF is only about quality of life (QOL) and you do not have the usual frog party in your chest then rate control to prevent atrial enlargement possibly leading to heart failure is the best option. There are other beta blockers than bisoprolol and other ways to reduce rate (calcium channel blockers such as diltiezem.) Bang some desks.

MummyLuv profile image
MummyLuv

Some good advice from Bob above 👆 if however the afib starts to impact your quality of love life through breathlessness you describe and you do want to try and get into NSR again then please have a look at mini maze and hybrid procedures. The success rate for these is so much higher (75-95%) when you have been in afib for a long time vs catheter ablation (30-50% after 2 treatments). Happy to answer any questions on this surgery

MummyLuv profile image
MummyLuv in reply toMummyLuv

Oh goodness! Where did that extra ‘love’ come from 😂😂 your quality of life not love life, bad mistake 🤣🤣

Nannysue1 profile image
Nannysue1 in reply toMummyLuv

🤣🤣🤣 or that as well!

Buffafly profile image
Buffafly in reply toMummyLuv

😍😂🤣

Mbhabdal profile image
Mbhabdal in reply toMummyLuv

Hi MummyLuv,

I have been in permanent AF for 12 months. Had a failed cardio version. Have a consultation with Mr. Stephen Hunter in Sheffield on 7 September. Wondered if I could talk to you about the mini maze procedure?

MummyLuv profile image
MummyLuv in reply toMbhabdal

Absolutely, drop me a PM, You’ve got the best man there in my opinion and from my research!

JOY2THEWORLD49 profile image
JOY2THEWORLD49

HiSo what meds are you taking for AF now?

I never had a cough with bisoprolol. I had with imbrace and shortness of breath with Metroprolol.

I never have had palpations either.

Do you still have fatigue?

cheri. JOY. 73. (NZ)

Duddles profile image
Duddles

Everyone is different but I would recommend ablation if you can. I was offered it aged 66, and ten years later I am out most days on a run, and race walking in competitions. I have the occasional - about three times a year - bouts when I got out of 'synch', usually from exercising without warming up - and 'in the pocket' fleccanide sorts that out. I found ablation life changing - I am fortunate it worked for me.

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