Permanent AF

[Mollykin]

Hi is anyone else in permanent AF I ended up in hospital 3 weeks ago as couldn’t breathe, heart and lungs had fluid in. Was treated for pneumonia but it put my heart into AF. I’m now home on Bisoprolol, furosemide and blood thinners. I’m being referred for a private echo scan as over 2000+ on nhs waiting list. I can’t afford it but I’m too anxious not to as already have LBBB and a leaky valve following a silent MI 10 years ago and scared this has caused more damage. I’m very anxious about going out for walks and back to work when I’m allowed (still exhausted from pneumonia). As heart still in AF doc thinks it could be permanent. Any tips to reassure me 🙏🏽

[thehypnotist]

I've been in af since 1987. Some of the issues you mentioned can certainly improve. My symptoms sound similar to you except the pneumonia! However, having a close friend who had pneumonia, the recovery from a severe bout, as she had, takes a very long time. Her breathlessness was worse than mine for sure but much improved over several months! So, yours maybe exacerbated at the moment. My leaky valve is right sided and I believe it's slightly easier to deal with than left side?

Monitor your BP and practice Breathing exercises is useful. Worth looking up nose breathing too.

[Mollykin in reply to thehypnotist]

Thank you 😊

[Dobbin69]

Hi Mollykin. I’ve had persistent AF..for sometime. Don’t know for how long but only became aware of it when I tried the ecg app on my smart watch. Was aware of arrhythmia for many years but it did not really bother me. So now on bisoprolol and an anticoagulant. Breathless mainly in the morning as fluid builds up in my lungs overnight but once up and about it eases. Bit breathless also when starting to exercise but it eases once I have warmed up. So essentially i try not to worry about it . That said your health history sounds more complex than mine so as ever be guided by health care professionals. Good luck i’m sure other people will post their own experiences.

[Sunnie2day in reply to Dobbin69]

I have recurrent pericarditis with some residual pericardial effusion that built up at night (even when not in an acute pericarditis flare) then went back down after I was up and about. I finally solved the build-up problem by investing in a wedge pillow so I could sleep with my upper body slightly elevated - no more build-up unless I'm in an acute flare of the pericarditis, that wedge pillow has been a very real help.

Have you thought about using one? They are a bit awkward at first (side sleep not the easiest but is doable with practice) but are well worth giving a go for the way they keep fluid from accumulating overnight on us Hearties.

[Mollykin in reply to Dobbin69]

thank you and good luck with your journey x

[Hidden]

Some foods or drinks can make it worse

You say you walk have you been walking

On a regular basis?

All these tablets can cause these things

Iv been told exercise is the best

But you need to check it.

Have you had electrolytes check

Pottassium your doctor can check

[Hidden]

Hi Mollykin, hope you doing ok. Just thought I would suggest getting a wrist band to wear when you go out 'in case'. I walk every afternoon for about 90 minutes - most on the village green - with 2 very young large dogs. Just been told I have LBBB. So I have ordered a band to wear with my details in brief and ICE telephone numbers and my name/d of b. The details are all on the inside of the band which is adjustable bit like a watch strap - for just under £14 it is peace of mind for me - just in case!