Hi everyone, just looking for others' experiences and reassurance.
Since having open heart surgery 12 weeks ago to correct a hole in my heart (diagnosed out of the blue at Christmas), I have been in arrhythmia for about 6 weeks. I had 48 hours on a holter monitor and this showed atrial flutter. I was already taking a raft of heart medication including anticolagulants and bisoprolol to support my heart post-surgery. I have been referred for DC Cardioversion and have this lined up for Tuesday.
I understand that the Cardioversion has a reasonable chance of success, at least short term, as this is a provoked arrythmia, but I'm really worried about having to contend with a dodgy rhythm long term. First off, I was very active prior to my surgery and now I'm getting dizzy when I push myself physically. Secondly, my consultant commented that 'you're too young to be left in arrythmia' and I wondered what exactly she meant by that - I'm now starting to notice my fluttering heart and it's very weird and unnerving, so maybe it was about addressing the symptoms, but then I read more and saw that flutter and fib can lead to heart failure - and I guess as I'm 39 this could mean that my over-worked heart will give out before something else gets me.
Has anyone lived with AFib or arrhythmia for a very long time, or know people who have made it into old age after a long journey with the condition?
I wasn't told that my surgery could provoke rhythm issues and apparently I'm now predisposed to it if I get stressed or become unwell, so I'm trying to understand what this means for the rest of my life...
Thanks if you've got this far, and sorry for the wobble. My symptoms are quite prominent today and I'm finding this situation really upsetting!
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LadyZ13
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I think we can all understand your concerns and it sounds as if your medics have your best interests at “heart” literally. At 39 it is right to avoid or at least minimise the need for potent medication and generally, atrial flutter is deemed to be one of the easiest arrhythmias to treat successfully. It is true that if arrhythmias continue untreated it can, over time, lead to heart failure but methinks you medics seemed determined not to let that happen. Obviously you earlier major heart surgery may add another dimension to your treatment needs but cardioversions are as common as chips and provided you follow the instructions, particularly relating to the use of anticoagulants, you really should not have much to worry about. I’ve added a link to a video taken at St George’s hospital, London which provides more information about the procedure.
These are nearly always successful but the duration of the success is impossible to determine but if a follow up ablation is recommended, these can be very successful for a longer term remedy and should substantially reduce the need for potent medication. I ought to point out that I’m not medically trained and I’m sure others will contribute later. Good luck next week, enjoy the cuppa and biscuits after it’s all over!
Thank you so much for taking the time to reply to me FlapJack, I really appreciate. I would very much like to reduce my meds at some point, even if they're not causing me too many issues. I cycle everywhere (or will when my recovery allows for it!) and enjoy things like skiing that aren't totally compatable with taking anticolagulants.
It's very reassuring to hear that the cardioversions are frequently successful. I'll dare not so much as sneeze afterwards in case that lose NSR! I guess the fact that I was referred for cardioversion after 3 weeks is a good sign that the medics won't let it persist long enough to put me at risk of HR. I did opt to go private to have the DCCV because I didn't want to wait months for it and we're paying for that service. I hope that if an ablation is necessary I'll be able to deploy the same privilege. Reading the failure rates of Cardioversion (42% after a month and 80% after a year) makes for sobering reading - though this is for Afib and not flutter, and results from 10 years ago. I do home I get NSR and that it holds indefinitely! My consultant said it was more likely to hold as my flutter was provoked by the surgery.
I did enjoy the video - especially the idea that you wake up feeling better than you did before the procedure. So far every elective admission to hospital has been the other way around, so this will be refreshing!
Thanks for the reply. It’s important to understand that a CV doesn’t do anything to change the structure of the heart. It’s very much like re-booting a pc or re-setting a TV by switching it off, then on again so arguably, the condition which allowed the irregular electrical impulses to occur really don’t change. That said, as you say, the earlier it’s treated the better so you should be well placed 🤞🤞🤞for the best possible results.
I have been telling everyone it's just like turning it off and on again! But that so often does seem to be the 'fix' for our electronics, I can't help but be optimistic... My heart has 'just' healed this way and needs a bit of a jump to see if it can remember what beating is supposed to be like... I wish I'd been able to get the DCCV a month ago but I missed an apixaban dose and despite the pill literature saying that was OK, the EP insists on 3 weeks of complete coverage before they'll go for it. I felt like a total idiot!
Been in and out of arrhythmias (fib and flutter and tachy) for ten years with give ablations, tried the entire pharmacopoeia it seems, and multiple cardioversions. Still here farming and going strong … just doing it SLOWLY.
Hang in there. It’s not a death sentence. Something else will probably get you.
Ah DKBX, thank you for sharing that. It does help to hear it. I'd hate to have to slow down already but it might give me that excuse to invest in an eBike!
I’ve had afib/flutter since I was in my 30’s although I was told I had syndrome X for many years. Eventually I was put on all the usual heart tablets including flecainide in my early 70’s or mid to late 60’s. Eventually pre flecainide I had an ablation, then 3 or 4 cardioversions.
Im hospital now awaiting a pacemaker then when my heart has healed from thst I will be having a left sided ablation in Harefield. The flecainide was for me a miracle drug but recently my heart started to beat too slowly and I was woozy light headed and passing out hence the pacemaker
The reason for this long screed is you asked if anyone has had afib/flutter (and tachycardia in my case) for a long time and yes I have although not treated for years and I’m 80 next birthday
Please don’t worry about the cardioversion as there is nothing to it, and takes seconds to a few minutes, except the relief of waking up feeling “normal” you must temember to take it easy for quite a while as your heart has had another shock after having g had surgery
Also it is very early days since your surgery so your poor heart is having a complain and could very well put itself back in NSR but if your cardiologist is willing to perform a cardioversion go for it as that will be a quicker return to normal
Thank you Pat, your reply is very reassuring indeed. These heart journeys can be a bit complicated and it can take a while to get us on the best management for our situations, but it sounds like you have recieved excellent care. Good luck with your pacemaker fitting and left sided ablation - I hope it leaves you feeling stronger. And thanks again x
Hi Lady. Like you I had OHS back in January this year. I went into Afib after it, and this is very very common so fear not having a cardioversion plus meds will free u up I first started with permanent Afib 6 years ago so having had various cardioversions, ablations etc I for now have been Afib free since Feb. Fear not have your cardioversion as soon as you can. Good luck.
Thank you so much Sally, this is enormously reassuring. I'm very glad they were able to correct your Afib. I've got my cardioversion on Tuesday and it can't come soon enough as my symptoms have been gradually getting worse. Thanks again for replying!
Hi, I've had 3 cardioversions and each one lasted for 13-18 mths during which time I lived as I had done before Afib, maybe if I'd cut down on my drinking they would have lasted longer.
This is good to hear! Right now the cardioversion can't come soon enough after a sleepless night with a racing heart and it doing 100+ when I'm just sitting down. I'm so exhausted by all the treatment but know there's more to come...
I’ve had Paroxysmal AF since I was 35 about once every 4-5 years which was provoked by alcohol or lots of caffeine. Converted back with a few days by exercise until August 22 when I got AF again, too much wine again! I was Cardioverted after 4 weeks then mid December I went into Flutter and CV two days later, been ok since now on very low dose beta blocker Metoprolol. I am now 65. Both Cardioversions were quick and straightforward. They did a TOE both times before CV which is a Trans Oesophageal Echo which is a check to see if any clot has formed around heart before they do the CV.
I want to reassure you that in the last 30 years I have trained and competed in many events and forgotten I ever had AF for most of that time aside from being visited by AF once every 4-5 years.
Now that i age I have a healthful Mediterranean diet only drink decaf and only drink half a glass of wine maybe once a week. Go and enjoy life there’s plenty ahead of you
Thanks OzJames, this is really good to hear. I've yet to discover whether there are particular triggers that I'll need to avoid (number one for me was open heart surgery! 😆) and I do worry how quickly the NHS will move to correct it should it reoccur. I was curious about you being able to convert back with exercise - is that A Thing? And what sort of exercise worked for you?
I'm so glad you've been able to lead an active - indeed, competitive! - life since the AF. I was very active before discovering I had a hole in my heart and rely on my bike to get to work once the schools start back, so your story is very encouraging. Thank you for sharing it with me!
Well some people have used exercise but I don’t believe it’s a ‘thing’ My theory when I was 35 and offered a shock via CV was that I’d go to the park first and try my own shock.. some short 50m sprints followed by 20m walk then repeat a few times. Another time I jumped into our pool at home in winter. Now I would not recommend this as some people could make it worse. I guess I was not well informed at the time but it worked at least 6 times over 30 years. Now that I’m older my cardio said not worth the risk so we tried drugs and then booked in CV. The low amount of joules it uses should not affect the structure of your heart.
Via my Apple Watch I keep and eye on my HR and make an effort to not go over 140 HR which is about 85% of my recommended HR for my age. I manage to go for daily brisk walks of about 5km, reformer Pilates twice a week and indoor bike about 10km twice a week. Take it easy for first month after CV only going for short easy walks build up gradually. It will be frustrating for first 6 months but things will settle down and feel like normal after that
It's a whole new world of feeling that your actions can be responsible for the behaviour of your heart in such a direct way! My cardiac rehab team had said not to push my heart for the first couple of weeks after CV and I'm hoping there will be a nice leaflet or something to guide me. The rehab nurses also said I was fine to have coffee etc in moderation which was interesting as I was expecting a full caffeine / chocolate / alcohol ban, but then as this is the result of surgery perhaps they're less worried about the lifestyle elements. It is so interesting hearing about other people's experiences! And I'm now off for my own daily 5km lunchwalk 😊 Thanks again for sharing.
Yes that’s an interesting thought but as I said once things have settled a few months down the track you will hopefully not have to consciously think about your heart and get on with life. This is a great place to share your concerns and questions. There are many here than have helped me during the last 12 months. Enjoy the walk and go and buy Breath by James Nestor he talks about how important breathing properly is… it certainly has helped me relax
I'm sure others here can reply in more detail about long-term arrythmia issues (I've had mine about 17 years), but I can attest to the benefits of cardioversion. A week after my first ablation (cryo), I went into a very prolonged a-fib episode and was told by my EP to meet him in the arrythmia lab of the hospital where I had the ablation. I went in, was settled in for the procedure, and it was done in five minutes, leaving me in normal sinus rhythm. It sort of re-boots the heart if it's stuck in an ongoing loop -- hard to explain! I've had two and they're easy as pie. Wishing you well for a successful recovery.
Thanks for sharing your story, it's really useful and reassuring to hear. Out of interest, how long were you left in Afib before you were given cardioversion? I've had to wait 6 weeks for this, and I appreciate it's post surgical so possibly they might have hoped I would have come out of it, but I'm worried that it the DCCV fails I'll be left for a while... I'm so glad your procedure went smoothy both times. I'm less worried about the procedure itself and more that my heart might not cooperate for long! Thank you for the well wishes, they're much appreciated.
After that first ablation, the a-fib episode I'm referring to occurred a few days after the procedure, and lasted almost 24 hours, at which time I called my EP and then met him at the arrythmia lab as mentioned. I guess it's a hit-or-miss situation with CVs, and I'll be keeping fingers crossed that it works well -- and long-lasting -- for your situation.
I gather that any heart surgery can spark off arrhythmias such as atrial fibrillation or, in your case, atrial flutter. The effect this has on your physical health and psychological feelings depends not so much on the rhythm (which is only at the top of the heart, so of less consequence to your long-term health) as the effect this can have on the pumping part of the heart, the ventricles at the bottom. It can cause them to beat far too quickly, for example, and reduce the heart's output so tiredness and a kind of breathlessness, or dizziness, lie around every corner.
When I had AFl in 2019, I found it truly debilitating and couldn't easily even walk too far without feeling the symptoms. Of course, this brought Wirth it awful anxiety with fears about where it all might lead but, in the end, the cardiologist I saw did manage to convince me that, however bad it felt, it could never lead to anything awful such as a heart attack or worse. And, of course he was right.
It proved a real struggle to get my heart rate down from 155bpm, a rate at which flutter often sticks at, it seems (AFl is different from AF as the heart rate is nearly always a step-wise ratio of the atrium's rate of about 300bpm, hence 150 / 100 / 75). Mine flipped between 155 and 105 with bisoprolol. Eventually, digoxin helped bring it right down and life became much more bearable. An ablation came my way before the planned cardio version, and that solved it safely and completely. Now, however, I get ectopic beats regularly and AF occasionally (not AFl).
Fear and anxiety are the big problems with all arrhythmias but they do lessen - somewhat - over time. If I can answer any other questions that might help, ask away, but, most of all, take to heart (!) that this feels 100x worse than it actually is. Truly, you are not as ill as it brings you to feel.
One last thing. I never had a cardioversion in the end, but I gather that they can be much more effective with AFl than AF, so let's hope it sorts you out!
Hi Steve, thanks for coming in with your comment. Last night was awful, I felt my heart was pounding all night and my Fitbit kept saying '140' or simliar, scaring the bejaysus out of me. Your comment about the 3 factor step ratio to the atrial beat is interesting and I wonder if that's why I've hovered around 100bpm most of today. It feels sore and strange but if I didn't have the Fitbit and all the data to fret over I'd probably not be super aware - other than not being able to take my pulse because it's too irregular. It's been going on for quite some time now and I wonder if it's ramping up as attempted correction is but days away. I'm encouraged by your assessment that cardioversion has a decent success rate for AFL and I share your hope that it's all I need!
Hi again. Atrial flutter creates a very regular pulse rate; it is AF that creates irregularity. If you have that, you could either have AF or - what I often have - a normal rhythm mingled in with ectopic beats that creates a feeling of palpitations. These are seen as harmless by doctors as, unlike AF, there is no potential for clot formation in the atrial appendage.
A good home ECG, I have found, if it’s not something that will add to your anxiety, is the Wellue AI monitor which you can run for from 5 minutes up to a whole day . The AI analysis that comes free with it (needs a laptop and Wi-Fi) is very comprehensive.
It's strange - I assumed I had AFib but a 48 hr holter and ECG during an exercise test both showed very regular flutter. But I can't feel my pulse as regular and my Fitbit is all over the place. I'll see what they say next week.
Thanks also for the suggestion of the monitor. I was in two minds about investing - data is power but it's easy to start to obsess. I was going to ask my EP about home monitors so thank you for adding to that train of thought.
The usual home monitor recommendation is the Kardia, which I used to own, is very convenient but it is limited in what it can detect and costs nearly £10 each month, even to make it just a little more useful. The Wellue devices detect a wide range of arrythmias use AI and even their cheap touch screen one will record for 5 minutes.
I was first diagnosed with AF at age 48 and now over 30 years later with 4 ablations and 24 dc cardioversions under my belt. My last cardioversion was in June this year . I've had a couple of cardioversions last 4/5 years and many 12 months.
You may well find that this is all you need. I do find that stress and getting over tired can be triggers. Wishing you well!
Wow Jalia, that's quite a history - I'm sorry you've needed quite so many dccvs and the 4 ablations too. I will take heed about triggers, thank you! And thank you for the good wishes, it means a lot.
I've just read your ɓio Zoe . You've certainly been through the mill and you've kept yourself so fit. This most certainly has stood you in good stead. A cardioversion will just be a walk in the park for you. I'll follow your progress with great interest.
Best wishes
J
Good luck for Tuesday, please let us know how you get on 🤞
I will! I'll add to this thread and post to my blog (link in my bio) - starting a blog about my cardiac journey when the hole was discovered has pretty much kept me sane through it all!
Well, DDCV all done and other than some minor soreness to the skin all was good. My heart went into sinus at the first time of asking. If it loses NSR again I'll be referred for an ablation so please everyone cross your fingers that it behaves itself now...
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