Walking in rhythm

[diminished7th]

Hello, long time lurker on here and thank you to all the regular posters who keep us lurkers so well informed. Sorry in advance for the long post

My afib story started in Feb 19 and like all new Afibbers I was scared and ignorant of the condition. I am very lucky to have no symptoms and don't feel any different with or without the Afib. After 2 week monitoring and various ECG and an Echocardiogram I saw an EP in July 2019 and as my episodes were far and few between we decided I didn't need any meds as it was 'lone PAF'. 24 hour monitor for BP showed average 118/70.

Life carried on with few short episodes until February 2021 when a few days after the first COVID jab (coincidental? who knows?) I started with Persistent Afib. GP referred me to Cardiology and saw a cardiologist in March. She didn't listen to my heart or ask me any questions other than do you want a cardioversion. She faced her keyboard for the entire 10 minutes I spent with her and said there was no need to see an EP.

She prescribed Apixaban and 1.25 mg Bisoprolol as rate was steady at about 75/80 and booked a cardioversion. Had that in July 21 but it held only until I slept that evening. Had an echo which was all ok. BP is usually around 118/75. Afib remained persistent and when I had the follow up appointment with cardilogist (over the phone) I told her it had returned and she was very dismissive and said she was signing me off. I was ok with this as I'd already decided to ask for a referal to the Freeman when I saw my GP.

Saw GP mid September 21 and he was great. I was with him for almost 30 minutes and he sat facing me the entire time asking many questions and said I was too young at 63 to have only tried one cardioversion and no alternative solutions. He referred me to the EP I requested and sent me a message 2 days later to confirm that he had done this. Had first appointment with the EP in October and again he was very thorough. We agreed that the best treatment plan for me was to try a second cardioversion but he wanted me to take Amiodorane prior the procedure for at least a month and then as long as bloods and chest x rays were ok to continue for a maximum of 1 year and then reassess the situation. I started the meds on 1st December (he stopped the bisoprolol)

I have seen him since then for a brief appointment to check bloods and a see how I was doing on the amiodorane. He had explained to me that is a toxic drug and all the possible side effects. So far I have no reason to think it is having any adverse effects, time will tell and he will stop the drug.

Anyway fast forward to Monday 9 Jan 2023 and I get a phone call asking me to go for a pre op on Jan 17th and DCV on Jan 19th. Happy with that. Well lo and behold on Wenesday 11 January I slipped back into NSR and have been walking in rhythm since then. I can only think it's the meds but I will still have the appontment on Tuesday and hopefully I won't need the DCV as I'll still be in rhythm.

I hope my story will provide anybody in a similar situation that there is light in the tunnel. I know that it's likely to come back but I now have a great EP who I know will offer the best treatment plan for me, whether that's ablation in the future or whatever else is out there.

Thanks for reading and may your Afib journey be a good one.

Sue x

[BobD Volunteer]

Sounds like the amiodarone did its job. It often does.I hope all goes well for you on this drug though I do worry a year is a long time so keep watch and do stay out of any sun we may get..

[diminished7th in reply to BobD]

Thanks Bob, yes he was most insistent about this and has arranged bloods and chest x ray every 3 months.

[Jalia]

Good to hear Sue! Let's hope it continues!

[jeanjeannie50]

Hi Sue

I think I'd still have the pre CV appointment too. I once went back into normal sinus rhythm after having the pads put on my chest ready for a cardioversion. Good to hear that you have an excellent EP who listens to what you say. Try walking up a steep hill before Tuesday, just in case exertion slips you back into AF.

Jean

[diminished7th in reply to jeanjeannie50]

Thanks Jean, we live at the top of a bank (hill) so have to go up it every day. It cetainly gets the Heart pumping!

[jeanjeannie50 in reply to diminished7th]

I once walked up a hill the day after one of my many cardioversions and went straight back into AF.

[Bagrat]

Good to keep appointment I would think, we live at the top of what used to be a gentle bank but seems to have got steeper the last few years!!

[diminished7th in reply to Bagrat]

Yes, our hill seems a long drag some days! Especially cold wet and windy days. Summer not so bad

[Speed]

Hi Sue. Small point. You stated Mon 9th Jan ‘22. Presumably that should be this year not ‘22. Helps context. You can correct through edit option.

[diminished7th in reply to Speed]

Oh that should be January 2023, thanks for pointing it out. I've edited the post accordingly.

[Speed in reply to diminished7th]

Below your post, there’s a heading “written by” with your profile and below this “related tags” and below this a blue block with “reply”. Go to the right and there is a drop down “More” within this is “edit” and you can amend your post from here.

[Rainfern]

Thank you diminished 7th for your heartening post. I'm at the new to Afib and scared stage. Like you the symptoms went persistent days after a covid booster jab. Before then I was fit, healthy, full of energy. The way I see it the data shows around 1 in 20 people hospitalised for covid develop AF. That's huge. So better the vaccine for the common good, but all the same needs yellow carding.

It's good to hear your timetable of events and how you're getting through despite some delays and mixed encounters with medics. Also to learn your experiences with medications. I live in fear that everything is moving too slow and by the time I get to see an EP or cardiologist it'll be too late to do anything. All this talk of ablation being an uncertain business for persistent AF has got to me.

I'm so glad you've had such success with the meds.

So reading your post has really cheered me up with my cup of tea (decaf) in bed! Thank you!

[diminished7th in reply to Rainfern]

Pleased to have cheered you up. To be honest I thought it would be unlikely to get back in rhythm after 10 months but was really happy that I can convert back. I'm keen to hear what the EP says when I see him again. There is hope, it's just a matter of persevering and seeing the person that fits your circumstances. I'm lucky to live near to the Freeman hospital as they have a great reputation for treating arrythmias. Good luck with your journey xx

[SeatonRover]

Disgraceful behaviour by your first Cardiologist. You should complain to the hospital

[diminished7th in reply to SeatonRover]

I did seriously consider a complaint but as time has gone on I forgot to be honest. I think I have 12 months so may well reconsider, thanks for the prompt.

[Ppiman]

You might like to read this at some point. I was close to being given amiodarone as I can't take sotalol or flecainide for some reason:

pubmed.ncbi.nlm.nih.gov/323...

Steve

[diminished7th in reply to Ppiman]

Thanks Steve, I did see this and seriousl deliberated about taking it. As I trust my EP and am being monitred on a regular basis I decided to take it. I have not noticed any adverse effects to date so here's hoping I'll be of those unaffected.

[Ppiman in reply to diminished7th]

I think occasional GP and close self monitoring is the order of the day but that study impressed me with its safety given its online reputation.

Steve

[diminished7th in reply to Ppiman]

I agree, I was so nearly scared off it by some online 'reviews' but the EP was so clear about the potentail side effects and the monitoring I decided it was worth a punt for me. I'm looking forward to seeing him again in March (I will still see the arrythmia nurse tomorrow) to hear his next stage. Stay on for a while or see how it goes?

[Ppiman in reply to diminished7th]

It sounds as if you’re in good hands. That’s always a good feeling.

Steve

[HGates]

Seems odd they didn’t offer PIP flecainide whilst you were still paroxysmal & even stranger they didn’t put you on a rhythm control med temporarily following your cardioversion - I was on daily flecainide for a week following both of mine & then back to PIP. Amiodarone seems a fairly hardcore starter for ten after seemingly no attempts at any ‘gentler’ meds.

[Ppiman in reply to HGates]

I was told that flecainide and the other somewhat safer anti arrhythmia drugs can affect the heart’s electrical timings and be pro arrhythmic. This can name them too risky for some. Amiodarone, apart from its potential for someone dangerous general issues, seems to be very safe and effective for the heart itself - especially in low dose and for short duration.

Steve

[Fullofheart]

Sounds like amiodarone is very effective for you. But it can have long term consequences which is why it's a short term drug, used to sustain you in NSR for the procedures. Like others have said I'd stick with the appointments. Good luck!

[diminished7th in reply to Fullofheart]

Thank you, I had already decided I am going to my appointment tomorrow.

[bassets]

I hope everything goes well with the nurse, You seem to be doing really well, and how lovely to have such good practitioners. Best wishes