My a fib story.

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hi all I'm new on this forum I was taken in to hospital last August with a fast heart rate around 170-240 bpm told I had a fib kept in for a week while they increased the mess to lower my heart rate I was put on Bisropolo and digoxin mid week my heart was still running very quick they did a echo gram the next day they told me that my heart is pumping very weakly but to take this with a pinch of salt because of the fast heart rate they said they wait for my heart rate to lower and then when my warffering levels a right they will give me a cardio version I was then told I can leave and go home then to the end of September I went in to hospital again for a fast heart rate     This was in A and E stayed in for the night given beater blockers to lower heart rate then in the morning doctor come on dutie look at my notes and told me I have cardiomyopathy this was a big shock to me as my cardio doc said that the echo gram was impossible to go off due to the fast heart rate sent home then seen my cardiologist a few days later and he told me he needs to get me in normal sinuous rhythm and repeat a echo gram and take it from there so once my warffering levels was good I had a cardio version which was at the beginning of December while having the cardio version a junior Doctor told me that I have a week heart which she as seen from the echo gram from August told her I was told not to read to much into that echo but she insisted that my heart is weak the cardio version worked nurses told me that the echo is inconclusive to not worry when

went home very worried and upset see GP the next day told me also that the echo gram is inconclusive and also sent a letter to my cardiologists explaing what as been said to me by the A and E doctor and the one at the cardio version procedure two weeks later I phone my cardiologist spoke to pa who said she will get my cardiologist to call me as soon as possible which he did within the hour.

cardiologist told me to come in the next day for a repeat echo gram which came back normal with normal pumping action and my ef at above average the cardiologist  told me this the same day via a message left on my phone that he does not need to see me until. A years time a week after Christmas I was sent a letter from my cardiologist saying that all is fine and normal on the echo and he said that the a fib may have started from a chest infection and he will see me in one years time what I would like to know if any one else have had this experience which worried me no end be

being told that I had cardiomyopathy and a weak heart which none of showed up on the second echo gram.Thanks for reading and sorry for the long post

    

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  • Posted

    Hi Bernard, my story is quite similar to yours.

    was admitted in early Dec. 2014 with a tachycardia induced cardiomyopathy and was also in A-fib. 

    They did an echocardiogram, then an angiogram the next day which showed an ejection fraction of 25% (so a severe left ventricle cardiomyopathy). No mention was made about the echocardiogram being inconclusive, but this may explain why they went one step further and did an angiogram?

    Was put on apixaban (one of the 'new age' blood thinners) and cardioverted about this time last year ( once all the medicos had returned from their Xmas holidays - far more important than my heart failure!), but it only lasted a couple of days.

    The cardiologist then put me on Amioderone and cardioverted me again mid Feb. and I've been in sinus rhythm since then.

    After a month of being in rhythm, I had an MRI of my heart (which apparently is much more reliable than an echocardiogram) and my EF had gone from 25 to 54%!!

    after a few moths on Amioderone my cardiologist took me off Amioderone and put me onto Sotolol as long term Amioderone use has some potentially very nasty/deadly side effects (but is very effective) but is useful to 'dig you out of a hole' when nothing else works.

    So being in rhythm and on the meds for a month pretty much sorted out my cardiomyopathy. My EF is now improved a little more(58%).

    Hope this is of some help?

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    • Posted

      Hi Simon thanks for your reply hope you feel a lot better now and getting your life back,they never told me my Ef rate,now it's back to normal and all is well so the cardio Doctor said in the message on my phone and the letter which he sent me.On the repeat echo there was no cardiomyopath I was told this by the person doing the echogram, it seems that the doctors jumped the gun are you back to normal and do you see you Doctor still.
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  • Posted

    Hi Bernard, yeah, am pretty much back to normal now but had to be very careful the first few months. Used be on a very strict low sodium intake for the first four or five months, which was really difficult at first (I never knew just how much hidden salt there was in my diet-things like bread and vita-Brits were even too high in salt!

    My wife had been telling me for years that I would often stop breathing when sleeping so I did a sleep study after I got out of hospital, turned that I had severe sleep apnea(another possible cause of AF!).

    So now I sleep with a CPAP machine. After a couple of nights of using the CPAP I felt like a differnt person, the difference was amazing!!

    I suspect that my AF (and subsequent myopathy) was caused by a family pre-disposition, severe sleep apnea, and a big night on the booze a couple of weeks before I was carted off by the ambulance!

    so, a few lifestyle adjustments, but am all good now (fingers crossed).

    cardiologist doesn't want to see me for anther 12 months (that's gotta be a good thing!)

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    • Posted

      Hi Simon good to hear that your doing fine and recovering. Did you have any swelling in your feet or ankles my self I never had any once they got my heart rate down I felt a lot better but was still in af but could go out on long walks 6-8 miles lots of hills ( I live in South Wales Uk) now cardiovered and at the moment still in sinus rhym out walking most days 5 miles or more with lots of hills returning back to work next month gp said I can start light jogging never had any advice for diet just don't smoke or drink to much ( I have never smoked and now don't drink alcohol) I'm 51 yrs old this as put a lot of stress on me which I fined the hardest to cope with anyway I wish you all the best thanks for your reply.
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  • Posted

    Hi Bernard, no, no swelling. Just thought/felt like I had the flu or a virus of some sort for the best part of a couple of weeks until things got to the point where I couldn't walk more than about 20 metres without stopping to catch my breath! My wife said I was looking pretty grey and called an ambulance.

    I'm 49 and live in Adelaide, South Australia.

    i have noticed that if I go for a brisk walk, things are all ok, but when I incorporate a bit of light jigging and get my heart rate into the 120s, I start to skip beats, so now try to stay under 100 bpm as much as possible.

    My blod pressure machine has an Afib detection function on it, so I use it daily to make I don't go into Afib again and not notice it.

    Cheers,

    Simon.

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  • Posted

    Hi Bernard, it's good in a way that you,re second results seems ok. It's a disgrace that a junior doctor would say that too you without conclusive evidence. Unnecessary stress 
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    • Posted

      Hi Penropennies,thanks for your reply your right there it did add a lot of stress on me which I still find hard to cope with even now it still plays on my mind and cause me to have anxiety and worry.
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