Hello again. I still have PAF but am on the cusp of it becoming persistent. I have been told no more cardioversions. Over the years I have had to change my jobs because of AF - I’m now self employed as a gardener, I run my house as a “b and b” and we are self sufficient in veg at home thanks to my veggie garden. In hospital yesterday I was told different things by two doctors. I ended up being cardioverted again but earlier in the day I was close ( twice ) to being sent home in AF. I have never spontaneously converted, so assume this will be persistent AF.
Dr No 1 said that I would not be able to work, do gardening or to go to the gym in persistent AF.
Dr No 2 said that was not true, I should be able to do everything I did before.
What is your experience of work and exercise with persistent AF please?
This is such a wonderful group. Thankyou for all your help over the years.
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I was in lone persistent AF when first diagnosed and didn’t know I had it. Was not aware of a fast and irregular heartbeat but very occasionally I felt a little breathless which I had assumed was a return to asthma which I had as a lad. Although retired, I was working part time and experienced no problems. It did change when I was put on the usual medication but I think much of my problems were brought on by anxiety and fear of the unknown. I know several people with persistent/permanent AF, some work full time others are retired but remain active. I expect it all depends on personal circumstances which can be so different for each individual but I suggest you try and maintain an active lifestyle and continue to live your life to the full. So many here seem to find the transition a blessing, no more worrying about if or when AF might return. Do not talk yourself into having a sedentary lifestyle (unless you want to!)......
I definitely don’t want a sedentary lifestyle. I am very frightened about the transition and what it will mean to me, but there are definite upsides with regard to the worrying when af will happen. I really hope I don’t have to replace that worry with the worry of being unable to work and keep a roof over my head.
Best to ask your EP whether you can continue with your job or exercise while you are in AFib. If it does become persistent you should let him know, because he may want to bring your ablation forward.
At 19 stone I think it’s likely you would find it less easy to cope in persistent AFib.
Thank you for your reply badger. I had wondered about whether things would be harder because I am heavier. My EP is impossible to contact on the NHS and I think if I go into persistent AF I will have to arrange a private appointment. It’s a good idea, thank you.
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My son has continued to exercise whilst in persistent AF. To my mind too strenuously. He has also lost 1.5 stone which must help. My EP said I would feel much better when my AF became persistent, it was the going in and out on a daily basis which was causing the problems.
If you and your EP agree that you are not going to pursue NSR then that will be permanent AF. I am sure I have seen posts from people in permanent AF who work out quite strenuously. I think it is quite difficult to predict how you would be without knowing what your usual symptoms are.
I was regularly going into AFIB. Had nearly 10 cardioversions in Emergency rooms. However, I discovered taking one low-dose Flecainide pill cardioverted me at home . . . so no more hospital trips!
You didn't say whether you were recommended antiarrhythmic med or ablation.
I didn't want permanent AFIB and all that it entails. Although, many folks on here who are permanent say it's not too bad ... do all the things they normally did but just a bit slower.
My Cardiology nurse said they had many patients who have kept AFIB at bay for years while on Flecainide.
I considered that option, but chose ablation. After an ablation 10 years ago .... I went 10 years with normal heart rate. Then, the AFIB came back in AUG. So ... I got another ablation in OCT. No big deal. Back to normal heart beat. Wearing a heart monitor for 2 weeks as I type this.
If you haven't thoroughly explored these options .... maybe this will give you something to think about. In my experience, GP's don't know much about AFIB. You need to consult with the best Electrophysiologist you can find.
Thank you so much. I have a really experienced EP but he is difficult to get hold of unfortunately. For many years I was using a PIP approach but flecainide never worked that way. My EP had written that my dosage could be raised if needed and yesterday it was increased to 200 mg flec with 2.5 mg bisoprolol.After the episode two days ago, my heart is quite active, in a different way to usual. I keep getting 30 second runs of Palpitations or runs of even but very fast beats ( which I’ve never had before). Yesterday this happened about 10 times. My stomach gets very upset when I have AF and I always get sickness and a dodgy tummy when it starts which doesn’t go away for a few days. ( it may be the IV flec) I was sick several times yesterday too. I just hope my heart settles down over the next few weeks.
I’m on the waiting list for ablation now - but it will be next year because of covid. It’s amazing that your ablation kept you “regular” for 10 years.
I’m trying to remain positive but finding it difficult at the moment.
I think you should get that checked out if possible because Flecainide can cause other arrhythmias and it sounds as though that may be happening. I have read here that Flecainide taken with food can cause bad side effects so try taking on an empty stomach well before meals if not doing that already. Sounds miserable 💜
Thanks Buffafly. I wondered about the flecainide. I have been on 2 x 50 mg for 3 months - now raised to 2 x 100 mg with 2.5 bisop. When I had the run of fast beats I did indeed think if this isn’t a one off I’m calling the doctor. I didn’t realise about the food issue. I will take that onboard. Thank you - it’s a good tip. I do always have sickness after being in hospital, it maybe the drugs or the stress bringing on IBS. I will have to see how I get on today.
Hi Buffafly - I googled more about flecainide after your reply and learned that it has a half life of 14 hours and doesn’t stay in your system . I’ve been taking it on getting up and going to bed - so 7am and 10 pm. I’m going to take it every 12 hours from now.
You say, "I’m on the waiting list for ablation now - but it will be next year because of covid." Once you get persistent and stay persistent, your heart remodels quite quickly. One year persistent can create seven rotor areas beyond the pulmonary veins which will require extensive ablation to get back to sinus. Emphasize persistent and try and get the date moved forward.
I think this such a personal issue and dependant upon so many variables. My instinct is to listen and trust my body and learn to know when I need to restrict activity. For many people doing nothing would be far worse and it seems to me that your emotional and psychological well-being are equally important as your physical abilities. I think it wise to consult a doctor about what harm you might do to yourself by overexertion but the point at which it becomes overexertion is very individual that I don’t know how any doctor could possibly predict that?
If my heart is playing up I take it that as communication so have found, the hard way, that rest and play is the best way to soothe my pounding heart. Less may be more in your case but none may be devastating.
Good to hear from you again CDreamer. Appreciated. I will have to just wait and see and try not to worry about disability. Having AF from the age of 39 destroyed my career. I took on less hefty jobs in order to cope better but have had to leave a couple of those because of too much time off. I’m now self employed as a gardener. So financially it has had a huge impact. I don’t have a good pension and my savings have gone because of covid and seeing my EP privately. I still have one child at home - so it is difficult to see my way through this.My other condition, lipoedema, means that I have to exercise every day to stay mobile and flexible. I have a relatively normal torso now, but my upper legs and bum and upper arms are supersized. It is a genetic condition.
Balancing requirements, some of which may be contradictory is an art, as I know only too well which is why I found the following statement helpful - said but a doctor to help me work out how to balance things - I am the expert on your condition & can give you possibilities & probabilities but you are the expert on you and know how this feels so we must pool our expertise and work together to work out the best way forward for the most acceptable possible outcome.
I’m paraphrasing but it helped me work out my priorities between health and finance and find a compromise which worked for me. If you don’t have your health & you rely on your fitness to be able to do a physical job then you won’t have either health nor income. You need to find a doctor who will work with you on this.
I like your paraphrasing. What a lovely doctor! The balance is difficult but as you say, if I can find the right help, it should be easier. Thank you CDreamer.
I have persistent AF, although in NSR ATM, and it comes for about 6 weeks at a time. I know my body and I can exercise by walking with a bit of a jog in between and cold water swimming. When my heart rate gets too high my body forces me to stop. I started initially with flecainide PIP, and then regular doses 2 X 100mg but now have been switched to low dose amiodarone. .....Until the next time. I have never met an EP, and not sure we even have one.Don't vegetate and dwell, get some exercise.
Thank you JackyMac. You are the first person I’ve contacted who can go 6 weeks and then self convert. I didn’t know that happened. I’m assuming that I won’t self convert and medics have said it is unlikely but I wonder what they base that on - I’ve never been in AF for longer than about 15 hours.It’s good to hear about your exercise. I wouldn’t have got an EP without this forum - because somebody once mentioned Blackpool Vic as a major heart centre in the NW. So even though I’m 50 miles away, I chose to go there.
I have permanent AF in that i have an erratic heartbeat and to prevent really fast outbreaks I take bisoprolol on a daily basis. I find this tends to limit the max heartrate altho the Cardiologist says i shouldn't go over 120bpm doing any activity anyway. I am active although I don't work as I've retired. I do HIIT sessions, I walk and if not for this damn pandemic, I would be hill walking, I garden and I DIY. If anything I am more concerned about the slight arthritis I have in both knees. Without that I would be running (despite the limit by the Cardiologist). It took a little while to come to terms with AF and I had lost confidence in my physical capabilities but I started tentatively. As i found i could do something, I pushed myself to try more and found i could do more. Everyone has different experiences with AF but it's finding what you can do.
Thank you so much. It’s great to know there are people in permanent AF who are very active and it doesn’t slow them down too much. I would be very happy with what you can do. I think AF does affect your confidence so much and you just have to pull yourself up by the bootstraps and have a “ one life - live it” attitude. Every time you have a setback your confidence drops again. It is why this forum is so great - there are loads of people to pick you up when your confidence tumbles. Thank you for taking the time to reply. Hugely appreciated.
I am sorry to read your recent post. . If you would like any advice re exercise and AF - you may find our A F Fact File helpful? Please visit our website heartrhythmalliance.org/afa... or call our helpline.
Hi, As is often quoted on the forum, everything depends upon the circumstances of the individual. I have knowingly had AF since 2017, I've undergone two DCCV's and with the blessing of my EP and the cardio nurses I have continued to train throughout. That being said I am asymptomatic and only notice a slight drop in my cardiovascular capability when in AF. Comparatively I consider myself very lucky. Just to keep an eye on things when I'm in the gym I wear a chest strap monitor and if my heart rate increases I ease off. The only advice that I have been given by the experts is that if I feel light headed, stop. Touch wood, to date I have never experienced lightheadedness. So what I'm saying is, as long as your condition allows and your EP is on board then you will be able to lead a life that is as close to a pre AF life as possible. Hope this helps. All the very best. Bill
Thank you for taking the time to reply. When you say you are asymptomatic in AF - do you mean you feel nothing? No difference at all? That is really useful information, thank you.
Hi, I feel nothing, the only reason I knew that I went from NSR to AF after my first and second DCCV's is because I am aware of my heart rate. There is a reduction in my CV capacity when I train, but I do not get light headed or completely wiped out, I just can't put as much effort in. Just to tie things up when in NSR my resting heart is around the 40 - 45 BPM mark and when training I rarely reach my maximum calculated heart rate of 154 BPM. When I am in AF my resting heart rate bounces around the 60 - 70 BPM mark, but shortly after starting any CV exercise it climbs rapidly and quickly exceeds my maximum calculated heart rate and that is my indicator, not how I'm feeling. As mentioned previously, after reading some of the posts from others on the forum regarding this mongrel condition I consider my extremely fortunate to be asymptomatic. Best of luck. Bill
My PAF sounds the same as Bill's I get it for a few to several hours several times a week but aside from fluttering and thumping in my chest it doesn't stop me from doing anything. I ski, go the the gym and cycle.
I'm 58 but have always been very fit so I guess having 'cardiovascular headroom' helps. As long as your doctor approves, I would say that getting and staying fit is helpful to the condition.
Yes - there's no impact at all. No discomfort, its just a bit annoying, but I'm getting used to it and sleep though it better.I don't feel tired or anything. I couldn't really say what my heart rate is in AF, as it's all over the place, but probably 80-90. Resting would be 50-60.
Hi there, I am going for my 4th cardioversion tomorrow and have been in persistent AF since the last week of November 2020. I still run and lift weights while in AF. Naturally I run considerably slower than when in NSR. And also lift lighter weights. The two different EP’s I have spoken to both said exercise was a good thing, if I manage my effort sensibly. As background I have been exercising like this consistently for 30-odd years.
Thank you for the reply. It’s good to know you can still exercise even if a bit tempered. Are you working at the moment? Also I read your old post - did you have your ablation in the end? How did it go?Being in persistent AF have you always felt confident about what you can do? Did you feel anxious at first and did that go? Thank you.
Everyone is different and react differently to this condition, for me I had PAF since 2009 and it was awful. In May 2016 I went into persistent AF and to be honest it felt so much better. I had a CV 3 years ago and enjoyed NSR for about 11 hrs and went back into AF. I was offered an Ablation but decided and in agreement with my EP agreed not to go ahead. I am still happy with my decision a made 5 years ago. I am able to walk long distances, swim, cycle and chase my Granddaughter about. My medication is Apixiban and 1.25mg Bisoporol daily. My resting heart rate varies between 65/70 BMP and on exercise can leap to 100/115 which is fine. I recently had a Echocardiogram which showed normal heart structure with no dilation in any of my heart chambers. For me being in permenent AF is so much better than PAF. So much so I have now stopped chasing the holy grail of NSR. Good Luck. Roy
I have permanent AF and still work fulltime as a telecomms engineer. My work also involves a lot of travel around North of England and Scotland. I find the longer I have persistent AF the less it bothers me as I become accustomed to the symptoms. I certainly don't miss going in and out of AF feeling lousy. My cardiologist discharged me back to my g.p. and neither seems concerned if I work or not.
Hi No rhythm. Thanks for replying. It sounds as though you are managing really well with your work especially with so much driving and it sounds like long hours. It is really heartening to know that people are living so well.
Hi Rhi 🙂 how can anyone say for sure what you will be like if you progress to persistent AF, we AFers are all very different . I would wait and see how persistent effects you if and when you reach that stage rather than deciding what you can and can't do now.
hello Doodle. You are right. We don’t know what will happen , but managing the fear is , to me, a really important part of living with this condition and this forum helps so much. It is brilliant so many people have replied with really positive stories of how they manage with work and exercise. Thanks to this I am starting to come out of the “ doom and gloom” being in A and E always gives me and I am starting to see the positives again.
I assume you are under the care of an Electrophysiologist? I assume you have explored your options to keep you away from Chronic afib? As far as being active, it is essential to stay fit and active for those of us with afib!
Hello. Thank you for your reply. Yes I am under the care of an EP . Under the NHS I would only see them every two years - and I usually see a member of their team. I saw them privately 3 months ago and they have added me to the ablation waiting list. But the waiting list is well over 12 months.
My friend is looking for a job, but I don't know how to help him. I may be able to find some reliable job site so that he can choose something suitable.
Guys, if you have problems at your workplace, then it seems to me that you should start looking for a new job. If you don't know where and how to find it, then I would highly recommend that you try to draw your attention to more info here ca.jooble.org/emploi/Quebec... , since here you can find many interesting vacancies.
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