Hello to all you wonderful people I do hope you are all keeping well and safe. I just wanted to let you know how my recovery 'journey' is progressing.
Unfortunately as I have already posted, for a while now I have been having problems with my blood pressure dropping very low and feeling as if I am about to pass out. This has been having a major impact on my QOL and greatly limiting my ability to go out and about, and have some sort of life within the current limitations we are all having to endure.
My GP said I was just 'over thinking' stuff !, but thankfully once I managed to contact my EP and following a further 24hr holter and BP monitoring he told me that all the results looked normal and that I was in NSR, so advised me to stop taking my maintenance dose of Flecainide ( 50mgs x2 daily), and to email him the outcomes in 10 days time.
Well four days ago I did as advised, stopped the Flec, On day two after stopping the medication I felt wonderful, was able to go out, walked for over half an hour, went for a drive, it was freedom at last!!😁 Then out of the blue on Saturday, yes you have guessed it , bam AF episode big time!! So no worries thought I - took PIP Flec and sat down to wait for it to work its magic- ten hours later and after taking 200mgs of Flec I thought, Shirley you need to get some help- called 999 emergency ambulance arrived, off to A&E in the wee small hours of Sunday morning (0200). Was informed by the medics on arrival at hospital that I was not in AF but was in atrial flutter- was then given 100mgs Flec IV, this made me feel absolutely terrible, but made no difference to my HR still in flutter banging away at over 200BPM. So was admitted to CCU- further waiting and eventually underwent cardioversion 12 and a half hours later!!
Bruising and burns on my chest but thankfully now back in normal sinus rhythm. Was told by a very energetic young nurse, 'well now love thats all done, you can go home'. No, another 8 hours of waiting for my discharge letter and new medication.
I was very politely informed by the cardiologist 'on take at the weekend' - I am now to have another ablation on the other atrium to 'sort out the flutter, we will let your EP know '. I have now been told to only take Flec as a PIP and have been prescribed Bisoprolol 2.5mg- 'to help with your heart rate but you might find it could make you feel dizzy and feel faint so don't drive if that happens'🤣 !!!!!!!!
I know our dear NHS is under pressure, and they do try there hardest to make us feel better, but boy oh boy my last few days have certainly added to my 'Ablation Journey'. Have sent my EP an email outlining the 'events', will wait and see what happens now!!.
Thank you all for reading so far, sorry such a very long post, but this has all knocked my confidence again a bit and as I live alone I just really needed to let off a bit of steam. Feeling very sore, and tired today, and feeling dizzy as expected after taking the Bisoprolol.
Oh kind people, what do I do!!
Shirley xx
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Ochg
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Vent away Shirley . I know the feeling of frustration that these events often generate. Just sharing helps and to be honest I don't think living alone makes that much difference. I think most of us with partners experience the feeling that talking about it just spreads the worry so we don't and manage in silence most of the time. Either that or no 2 is bored to death with the whole darned thing if we do mention it. After 16 odd years I know I try to keep it to myself. Bit like the boy with his finger in the dyke. lol
There's nothing wrong with having a good rant, Ochg. You've really been through it, no mistake. It sounds like your heart got used to a regular dose of Flec and was irritable anyway after the ablation and threw a wobbly.
I'm glad they got you back into NSR and your EP may be able to shed more light on the bout of AFlutter and whether ablation for it is needed. If so, it is a much more straightforward procedure, usually in the right atrium only and has a success rate in the mid to high nineties.
Try not to be too downhearted, your heart has had a real kicking, first ablation and now CV - rest up and think positively, your EP is the person best placed to decide what is next. Best wishes.
Thank you so much Finvola for your kindness and support, it has really helped me today. I am feeling very fragile and tearful, not me at all usually but this darn condition really dose test you to the limits, So again a big thank you .
Sending virtual hugs your way Shirley. It is so frustrating when setbacks hit us.
I love being able to speak with everyone here. As Bob says, even with a partner, it is hard as we don’t want to worry them or seem like we are complaining. You are amongst friends in this community - friends who understand first hand what you are going through. Xx
My first experience of ablation was for atrial flutter and if it makes you feel any better I was told that as the work is all in the right atrium it is the safer procedure.
I believe also that Flecainide can sometimes precipitate atrial flutter so maybe that had something to do with it.
I have had numerous cardioversions and it certainly does the trick for most, I am glad your heart has now settled down.
Now you need to try and relax maybe with some meditation as probably all will be settled for a while and hopefully until you have the Atrial Flutter ablation.
Thank you so much for your reply Pete, I am trying very hard to keep calm and relax, keep thinking it will come back again, and yes I know that will only make things worse so come on Shirley get a grip, chill a bit.!
That was a gentle complaint not a rant! you are very restrained. These things it appear are never simple and (for me) never move fast enough so I really understand your emotions. Not wanting to put a words in your mouth but I have recently described my own Ablation as Heartificial hope snatched away!
The good thing is that it will be sorted, they know what to do and if there is work in the Right atrium that is needed it clearly wont have been sorted by ablation in the left so you can be really encouraged by that.
The other thing is that if you can have good days it means that your ticker can work properly, so you had a teasing taste of what good looks like followed by a relapse but you can comfort yourself that when (not if) they get this sorted you will feel great
Oh thank you so much for your support Sfhmgusa. I fully endorse your description- heartificial hope snatched away.!!
I see what you mean about it being a good thing that if more work is needed in the other atrium now that they can address that - just a tiny matter of when !! Still hopefully if I can get a response from the EP he might put me on his list, 🤞.
Thank you once again for your advice and support it really has helped me, I will indeed keep the updates coming,
That’s very upsetting but on the other hand you have a diagnosis of what’s been holding you back and your GP can take his ‘overthinking’ you know where. I hope you feel better tomorrow 🌹🌻🌼🌸🌺
Thank you Buffafly, for your support and kindness. I am feeling very tired now so I think I’ll have some warm milk and go to bed. I hope I can get off to sleep, was difficult last night kept re living the ‘events’, fingers crossed 🤞 my mind will be a bit calmer tonight, my chest still feels a bit sore but not quite so bad as yesterday!
Flec - Flutter - Ablation!!!! been there, it would be useful for you to read my posts from Dec 2018. your condition may be different but Flec caused my Flutter but only diagnosed during the ablation. Keep your spirits up, remember there is a fix, it may take some time to get there though.
I had a similar experience if being discharged feeling like a zombie, barely able to wal from my local cardiac ward. Three times in fact in Aug 19, Sept19, March20! Same docs each time. It was like groundhog Day! I got the impression they thought I was just making a fuss and exaggerating because I wanted a cardioversion (like anyone WANTS a CV!). But I knew the drugs don't stop the Afib but they don't listen to us, it's just our heart!
So you are not alone. However once I was able to see the EPs I found the treatment, and personal understanding, so much better. Hopefully it'll go the same for you.
Thank you for your reply. At times the other day I also felt that some of the medics made very ‘light’ of the fact that I was feeling so unwell when ‘it’s just a flutter so we’ll just shock you’, statement was made ! 🤣🤣🤣
They are so used to it and also they do have to grow a bit of a hard shell to cope.
I asked a young cardiologist if I really did have a 'hole-in-the-heart' which I had been told I did, then didnt then did! His reply, "Oh yeah" and wandered off leaving me petrified. It was only the nice ultrasound lady who explained that something like 30% of people have a tiny hole and it's nothing to worry about generally!!!! Sometimes it's like being in a sitcom based in a hospital (actually, there IS an idea... I wonder if it has ever been done... off to pitch it to Channel Four - tee hee)
I had the same thing happen to me but only 9 days after my PVI Cryo ablation for AFIB. Woke up bang bang bang, 140 bpm , thought it was afib returned but I was breathless whereas previously I was asymptomatic in afib: I could run miles when in it .
I got hold of my EP via his PA who said don't panic, early days but if it gets worse go to a&e for check. Day after was worse heavy breathing just walking lounge to kitchen, bpm 140, so hospital it was.
Hospital did ECG confirmed Afib, spoke to my EP( in a different hospital); agreed to double dose of flec to try to cardiovert. They kept me a few hours lying down to confirm if flec had worked. It had not but they decided to release me as I was ok, so I went to the loo prior to leaving. I walked maybe 40 yards there and back and I could not get my breath! The doctor noticed how bad I was and decided to admit me to MAU. 30 hours later was sent for an echocardiogramme to check for problems in case the ablation had caused an issue, and the echo technician very cleverly advises I am in A flutter prior to the check. Not afib! A second ECG taken in MAU had confirmed this, but the person who diagnosed this presumably did not know I was being treated already as afib. A third ECG by the echo operator confirmed re entrant atrial flutter rate controlled to 140 bpm (by the diltiazem I was taking along with the flec). I was in hospital 2 days more but they would not electrically cardiovert me (dont know why) but was discharged. The day after I spoke to my EP who made arrangements for his Registrar to see me the same day ( and he spoke to the EP during the consultation). He reversed the increased flecainide dose as he advised that it was likely the flecainide had promoted the flutter and it was making me worse ! He was right! (I think the flecainide leaflet advises flec can cause high rate arrhythmias , which is why often people are given rate control as well as the flecainide rhythm control. My afib was always high rate). There was no flutter in any of my previous Ecgs and none during the PVI ablation so they were sure it was a new development. However he kept me on the base flecainide dose as it was still early after the afib, and he did not want that to come back, which I assume they believed was a worse outcome than the flutter.
Another ablation was arranged then for 3 weeks time. So I was stuck in 140bpm re entrant flutter for 3 weeks. I was absolutely fine so long as I did not move!
I bought a lot of music and read quite a number of books during the 3 weeks !
The good news is the flutter ablation is simpler , much less risky (right atria is away from phrenic nerve and Oesphagus etc) . I was quoted 90% success rate , but the registrar advised it extremely unlikely it will ever return once succesfully ablated).
The ablation was quicker than the PVI.
I do not believe I have had AFIB or flutter since the ablations, I stopped all drugs 3 months after the ablation, (May 15 2018) and was back running 6 miles cross country nearly as well as previous to developing AFib shortly after that.
I was 57.5 years old at the ablation and had no other co morbitities.
I am not medically trained, all above is just my experience.
From your description you have slightly different presentation of flutter than I had ( eg blood pressure effect -we are all different) but unless there are any other co morbitities you have in addition to the flutter I would think that you will have every chance to be sorted by the flutter ablation.
Hello KMRobbo, thank you for your reply and very detailed and interesting account of your ‘journey’. I am so glad that you are now well and back enjoying your running.
I am still waiting a response from my EP, fingers crossed he will put me forward for another ablation. This morning I am feeling a little bit delicate, my HR is regular but every so often I can feel a little flutter, I do hope it’s not going to happen again! Trying hard NOT to stress, don’t feel confident enough to venture out for a walk . This darn condition 🤣.
Thank you again for your support it is a great source of comfort,
Wow, Shirley that is some week you have had. No wonder your head is wrecked.Im not a believer in 24hr holter monitor as I feel 48 hr minimum. 8 hours waiting for discharge papers must be a record!! Good luck with your EP visit. I hope you are able to get out for your walks. Let us know what EP comes up with re meds and ablation. 💕🌞💐💐🙏🙏
Thank you for your reply, I really do appreciate your support. Yes, have had a difficult time of late to say the least! Feeling very faint again today, even though HR feels regular and is 68 at rest, BP standing is 100/60, so not been out for a walk today. Will be glad once these intense feelings of faint can be sorted, I am convinced it must be a reduced cardiac output that is making me feel so rotten.
Hi Shirley glad hr is good, bp a bit low (60) so maybe contributing to feeling faint? I suppose you are drinking plenty water(not chilled or sparkling) Take care, stay safe and well. Carole 💕💐🙏🙏
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