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I was diagnosed with AFib three months ago after taking myself off to A&E. After 5 hours I was taken to the MAU and put on a monitor. Eventually my heart returned to normal sinus rhythm, I was give bisoprolol and warfarin and sent home on the bus.

Apart from my INR being monitored I am having no other monitoring of any kind, and no referral to any other healthcare professional. I have been told that as I have had one episode that I will have another at some time.

I feel that I have been left to get on with it myself, with little support. What do I do next?

15 Replies

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  • Hi Lorac,

    Bit hard to say really but as a darn good start point I am gonna assume you know nothing about AF. Therefore the best you can ever do is to learn all about this demon and you can go not much wrong other than reading through the AFA website. It'll be a bit of a formidable information overload but in a nice way. It is so important you learn about what you have - and we're all in the same boat - to wildly different degrees. Then there are all the posts on here and there are one or two people on this forum who are very experienced 'lay persons' - if that's the right expression - who will always be able to give you the benefits of their experiences and wisdom.

    Next I suppose is not to stress out or worry yourself stir crazy - that'll only make things worse.

    Your treatment is much the same as mine and I would expect that the A & E people would have written to your GP and put you into the care of your GP - your GP will have to attend to the repeat prescriptions for both Warfarin and Bisoprolol (which are my meds too by the way), and your GP will have to sort out the ongoing INR tests for Warfarin if you are still on it and monitor your INR results. You don't say how long you have been prescribed these meds for.

    So, making a few assumptions here - I'd be inclined to make contact with your GP and discuss your concerns with him/her. Again, you don't say whether you've been given any instructions/training on the use of Warfarin, like diet etc.,

    It sounds like you may have been diagnosed with paroxysmal AF, in other words occasional. Frankly, if you don't lurch back into AF again, if you are stable with Warfarin (again your GP is the person here), if the meds don't knock you around too much, there isn't much they can monitor. If it does happen to come back - and it may not - your GP will need to fit you up with a Holter monitor for a given time and get a picture of what is going on. If you find you have a problem with meds then your GP is the person to discuss the issues with.

    Hope this helps.

    Cheers

  • Hi Carneuny, thank you for your reply. You are right , I know nothing but am putting that right. I feel better reading the replies to my post and am going to read other posts to find out more. No training on the diet aspect of taking warfarin apart from 'here is a booklet for you to read'.

    I felt as if I had been sent away with no support and not knowing where to turn next, especially if it were to happen again. It helps knowing I am not on my own.

  • Firstly welcome to our mad world of AF. You will learn that AF is a mongrel condition that can affect each individual very differently and also can affect each individual quite differently day to day. There is a lot for you to get to grips with so at the moment I will focus on the early practical steps that I believe you need to follow. Please note that none of us on here are medically qualified and all we do is share our experiences and make comments.

    When did you go to A&E and when did you get discharged?

    Did you not receive a discharge report from the hospital? If not then phone up and ask that you be sent a copy. Also request copies of all ECGs, other test results and other notes / reports. Normally the discharge report gets sent to the GP.

    Did they give you a yellow warfarin information pack, card, etc?

    Have they arranged your a visit to have your INR checked? This may be at an Anticoagulation clinic either at the hospital, or a clinic close to where you live or at your GP's surgery (this varies according to where you live, etc). If not then book an appointment because you should be checked out once or twice a week, usually for the first month or so or until INR is stable. Did they give

    When you have the hospital information (other than the warfarin aspects already stated) then book an appointment at your GP's to be checked out and to discuss your situation and develop a care plan. Hopefully your GP's will have an ECG machine at the practice (mine does) and they can do another ECG. You need to have BP and HB checked regularly (many of us on here have our own devices). It would be good to arrange with the GP to have a 48 hour or 7 day event recorder because you some people can have AF episodes at other times but not realise it. If your GP suggests seeing a cardiologist then push (you may need to push hard) to get referred to an Electrophysiologist (EP) as they are the cardiac specialists who deal with electrical misfunjctions with the heart (and body) and AF is electrical misfunctions.

    You don't mention the bisoprol dose.

    There is a wealth of information on the main AFA website and the booklets, data sheets and publications are well laid out and easy to read. You can download then but I suggest that you either print them or get the AFA to send you some of the booklets so that you can make notes, etc. It is also worthwhile becoming a member.

    Above all start keeping your own logs as to what happens, dates any medicines change (started, stopped, dose changed).

    Hope that you are not overwhelmed.

  • It happens exactly the same for me.

    But I've been OK .

    I don't expect to ever be perfect , but I didn't get a discharge sheet either. I work for this hospital and I asked for one.

    Told no need.

    Don't worry.

    People here are amazing helpful and very understanding.

    Good luck.

  • Just shows how different it is in different areas. I have been in 3 different hospitals in teh last 18 months and all 3 said about not leaving until had discharge report. This is particularily useful, if like me, you were taken to the local hospital by ambulance because then you can send the discharge report to consultant EP or cardiologist who will often be in a different hospital / CCG (aka trust). Even if they were in the same hospital I would still send it to them to make them aware.

  • PS - I would definitely get a copy.

  • I am glad there are supportive people on this site as support doesn't come from the Welsh NHS.

    Thanks for your reply Gwyn

  • Understood and somewhat agree with you.☺

  • Hi Peter, thank you for your very informative replies.

    I went to A&E on a Sunday evening in September (I live in Wales and they had an afternoon rugby game) and the waiting room was full. I was told it would be a three hour wait for triage and five hours for a doctor. I was nowhere near that time and have nothing but praise for the team. I had a cannula put in and numerous blood tests and ECG and after about four and a half hours I was moved to the MAU at about 4 am. I was discharged at 5 that afternoon and sent out after a mix up with a prescription to take two buses home. My INR is not stable yet, I have it checked at the surgery, and Bisoprolol is 2.5 mg daily and both are long term. The discharge letter they gave me was not completed properly and a Consultant I saw the following day for something else said that it was a waste of time and he needed more information than that and cancelled my operation.

    I saw a GP a couple of weeks ago and asked her about ongoing care. I was told that INR checks were the only thing that I needed and as I had one episode I would have another. Great!!!

    I will definitely ask questions when I see my usual GP in a couple of weeks. Hopefully I will get better answers from her.

    Thank you again

  • I was diagnosed late August when I wound up in A &E following severe palpitation. I found logging onto this forum was a good start in helping to break through the confusion of what PeterWh described as mongrel condition. It does seem there are a 1001 triggers and a 1001 different reactions and twice many theories . I think even docs struggle to find the causes , I have had two differing diagnosis since August - and remain just as confused.

    You may not get all the answers but you will find plenty of helpful comments on this forum . Some though do seem a bit harsh but never unkind and always well intended.

    Many folk have from reading posts really been through mill (I feel Ive got off fairly lightly so far) Everybody understands there is no single answer and therefore genuine questions are never pointless. Any worries do ask Ive found it good therapy.

    On the occasions Ive I wound up in hospital, including a cardio version i was not allowed to leave the ward unaccompanied.

    I also found that when I have rang the local cardio department they do aim to answer any concerns .

    Though still confused I am now learning not to worry too much or at least panicky as much as I was , now all I need to do is be less verbose.

    Good luck in coming to grips with the condition dont let it get you down

  • Sometimes asking just helps your own mind rationalise organise things.

  • There has been no mention of referring me to any other professionals so have no access to any other departments. This is why I needed to find this forum as it can hopefully provide the support I am not getting from anywhere else.

    I won't let it get me down and will look for answers here and AFA website.

    Thanks constabule

  • Make an appointment with your GP and discuss the best way forward with him/her. Saw mine yesterday and she was wonderfully helpful and informative

  • Seeing my GP in a couple of weeks, hopefully get some answers.

  • Ask for a double appointment.

    So he/she doesn't rush you.

    Hopefully you will get some not all( I haven't as yet!) Answers or maybe get a little more than you know now. ☺

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