What to do about working

Hi all, my AF journey is a 10 year one, to date. I've had 2 ablations, one for AF and the 2nd for AF and flutter. Numerous cardioversions, over night stays in hospital with heart failure several times. Since February of 2015 I've been back on Sotalol. Initial dose was 240 a day, dropped to 160. (80 twice a day) I'd had 12 days of a hr of over 160 at rest with no let up. I couldn't have another cardioversion at that time because my INR wasn't in range. After being at my wits end with it and pestering my AF nurse, the sotalol was prescribed and after 2 doses my heart rate dropped to mid 60's., thank goodness! Jump forward to now, I'm still on 180 a day and although I feel the AF/flutter at times, I've had no real bad 'episodes'., just a feeling it's being 'masked' and is underlying- every day., with a slowed down, some days more than others, very tired feeling. I have had employment during the last ten years, but at two jobs I had two very bad episodes which resulted in very low times for me waiting to see how I could be made to feel better, hence the ablations, cardioversions..

I have a supportive husband but I want to work again, but I'm scared.. What if I get a job and I have a bad episode again. This AF strikes as and when.. I've learnt stress is a big trigger and I know of other triggers so I'm aware of what can set me off. Do I look for a job, one I feel I could do- knowing AF may strike me down again, do employers need to know of my condition and will it hinder my application? I have a hobby, making jewellery - which has been like an escape for me when I've been really low and I have wonderful children. I just feel I need something more, for me, but how realistic is the thought of working again. I know people with AF do work, how do you cope? And has anyone accepted that not working is best for them? I'm so torn 😔

17 Replies

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  • Well we are all so different in how AF affects us......I find the fatigue is the hardest thing to cope with.....this could be due to the beta blocker or the AF???

    I work part time as an administrator for the NHS...the pressure can be quite stressful.......I do worry about this........I sometimes feel quite ill with exhaustion when I get home....some days I can't wait to retire, (March 2017)...others I like to feel useful in what I do and would miss that and the social interaction etc. I understand you feeling torn......I have only had AF for 4 years (only???....it feels like a lifetime).....no ablations or cardioversions...just meds...and its persistent now.

    My response is not too positive but I am sure you get a real mixed bag of advice!! Good Luck!

  • Hi, thank you for replying. That's it, I miss feeling useful but some days I'm quite happy in my own company cos of how I feel. I worked in a school then a pre school, loved working with children and I really miss it. But it's just too much of a risk to go back to. Both of my bad attacks happened whilst working there and I was gutted to say the least. Question is, what else could I do that doesn't exert me too much or isn't stressful. I feel young at 49 to think I'd never work again 😔 just don't know what todo for the best. So nice to speak (message) somebody that understands. Although I wouldn't wish this on anyone. Others don't know how deliberating it can be. Has the Doctor not talked to you about an ablation or cardioversion? Because I'm stable, my consultant says stick with taking the meds. Only if I have another bad episode may he reconsider.

  • Got sent to an EP about 18 months ago (had to ASK!)...he said if I was 38 and wanted to run marathons it might be worth trying an ablation but only gave it 50% chance of working first time (60% second).......decided not worth the risks......same with cardioversion...by the time I got to see him i had been in persistent over 6 months....so he didn't feel that that was worth it either...I have stuck with the meds, and seem fairly stable...although feel on the scrapheap treatment wise, at 62!

    Just about to have a rant on the post board as am after a check up.....if you want to read it!

  • Hi I understand too as I am a teacher with worsening AF and now waiting for an ablation before it becomes persistent!

    Some days I come home so exhausted as the other lovely lady said, and although I only have till August 2018 to retire, I wander if I will be able to keep teaching as schools are full of stress and over work!

    Maybe you could do some voluntary work to try it out as then you won't feel so stressed about your work performance and if all good you could begin to look for a paid alternative. You need to gain your confidence back. Good luck and good wishes.

    Sarah

  • Hi wightbaby, when you say persistent, are you continuously in rapid ventricular rate, and if so how do you deal with it?

  • Thank you for opening up on what could be a taboo subject, to work, or not. So many elements to this. Can I suggest do whatever is within your capacity. Let me tell you where I am. My wife raises our two beautiful boys. She always has, looks after me, and does a great job. I am our sole breadwinner, and I am self employed. I am in permanent AF, and have a real rollercoaster of how I feel on a day to day basis. I have always worked my chucks off, and still do. AF however, is proving a bit of a handful. Be it feeling very nauseous, totally fatigued, very breathless, I soldier on. But mentally I am starting to struggle. My employees look at me, as the blood literally drains from my face, and they worry. AF I say. I am used to it. Every business I have is for sale, and I am trying to downsize. I am only 58, a bit to go before any pensions, but I am seriously trying to shed everything, get rid of the stress, find something that I can enjoy, but still make money. Not easy. So, go back, but get something on your terms, pays you well, keep out of the road of the general public, and enjoy. Life is to short for regrets, and please do not fret about it. Go forward positively, and you will be fine. Good luck

  • What a lovely reply, thankyou. I sell a lot of the jewellery I make so I feel I'm contributing, it's more the social, getting out bit. Must be very challenging doing all you do having AF but you have a good attitude. I've been to the depths of depression because of this in the past when I've been in heart failure and have pleaded with my consultant just to take it away and he has tried, but it's not always 'fixable'. It's good to get others input, I hope the downsizing goes well and you find something that works for you with less stress 😊

  • Hi Andrea, don't you think going back to work would increase the stress level again. Worrying about work and all the agro that goes with it. What about volunteer work?

    You do the hours you can, you want to be there because you are helping people, and you are appreciated, and at the end of the day on your way home there is a smile on your face and an extra bounce in your step.

    Helping people and having them thank you with a lovely smile is just another drug,

    ♥BUT ONE THAT ACTUALLY WORKS♥

  • Hi Greg, thank you for replying 😊 yes I have thought of volunteering, have done it a few times in the past. I'm gonna have a good think and see what's out there and hopefully something will pop up that I'd be interested in/good at doing 😃

  • Hi andria67. So sorry to hear how AF has disrupted your life. I totally empathise as do many people on here. I am 37 and work full time as a community nurse. I have to adapt my diary sometimes around my daily episodes especially when i am dizzy as i can't drive at those times. I am always always tired but i have adapted to that. I have got used to the disruption of arrythmias and working full time and in my opinion that is the thing...we adapt as humans even to difficult things...they become the new 'normal'.......if you want to work maybe just try it and if too much then reassess....we have to live our lives to the full despite the inside of our chest going absolutely beserk. Keep us posted as i would like to hear what you decide and how you get on. Ps. If you get a job that has occ health, we fall under discrimination legislation (well..my occ health statements say so anyway)...so that is a protective and supportive measure to help in work. Xxx

  • Hi Vony, thankyou 😊 I was on a beta blocker for the first six years and 'managed' working and raising a family. But one day the meds stopped working and I fainted in the school dinner hall and was 'out' for a good few minutes. Paramedics were called and when I came round I was so upset it had happened infront of children and staff. I had felt hot and dizzy, but it wasn't unusual to feel that way- but it took me out. I had spoken that morning to my gp about feeling ok ish still on the meds. As I mentioned earlier, since then I've had heart failure several times, 2 ablations and a lot of cardioversions. I'm now back on the meds I was originally on.. Which is why although stable atm it can switch without warning. My mum had a stroke in her early 60's, devastating 😔 and her mum did too. I know I have to 'live for now' and my history with AF is far more detailed than I could write on here, so it's hard to tell all as it has been. I do admire people that can work whilst having AF, it does effect everyone differently as we are all so individual. I just gotta weigh up the pro's and cons I spose 👍

  • Remember that your Mum wasn't anticoagulated - and you, surely, are, so your experience can be very different from theirs.

  • Hi. Yes I agree, Everyone's experience is different. My mum wasn't aware of any heart issues, so no she was anti coagulated. She was after though obviously. I was only put on warfarin before my first ablation in 2013. Have been kept on it ever since.

  • *wasn't

  • Go for it 😁

  • I am a home health nurse and had my first afib episode 2 mo ago, was a ER, very scary event. I have had such side effects from mess leaving me dizzy alot, etc I had to step down and take a very part time position. Was t what I wanted but I could not manage driving everyday, all day fighting fatigue and diziness.

  • I agree. Go for it. Get a job you like and telex within it. Can you be part time ?

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