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12 months post VR and experiencing AF

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maisiejane
maisiejane

I had a Aortic Valve Replacement 12 months ago, after 10 weeks PO I was diagnosed with an episode of AF, but was told by A&E that it was usual for my heart to experience AF due to the trauma it had been put through, and not to worry as I was already taking asprin, they also told me it was anxiety and to stop looking on the internet!

I am still experiencing symptoms but each time I have it checked out by my GP or at my appointments with the Cardiologist there is no sign. I am off all medication apart from daily 75mg asprin but at times I feel so unwell, some of the symptoms are difficult to articulate and I wondered if other sufferers of AF could list their personal symptoms.

0 likes, 21 replies

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  • derek76
    derek76 maisiejane

    Posted

    I had my aortic valve replaced in 2012 and went into AF right away as about a third of patients do. Most revert to sinus rhythm in a few days. I didn't and had an unsuccessful  cardioversion around day seven. I was put on warfarin and Amiodarone until I had another cardioversion three months later. 

    The surgeon said that I could stop the drugs three months after being in sinus rhythm but the cardiologist said otherwise, I stopped them both after the three months due to the side effects of them and went back to aspirin. 

    During that time I was in AF I did not really notice it or feel unwell. I'm very surprised at the attitude of you GP and cardiologist. You are the patient and know how your heart is functioning. You should ask for a seven day ECG monitor to be fitted as aspirin is not enough protection when you are in AF. If you went to cardio rehab were you all right during the exercises?

    I had follow two up consultations with my surgeon in the first year when they did echo cardiograms before being referred back to the care of cardiology who now do an annual echocardiogram 

    • maisiejane
      maisiejane derek76

      Posted

      Hi Derek,

      Thank you for your reply.

      I was on Bisoprolol at the lowest dose as I didnt tolerate it too well for  6 months the Cardiologist took me off it as she felt it was affecting my mood!( I felt my mood was normal for someone who had gone through OHS, but apparently this kind of surgery and medication can cause depression!!!!!) She told me to stop my beta blocker that day and in 6 weeks I wouldhave a 48 hour monitor, following the monitor  she then wrote to my GP and copied me into the letter and stated that my heart rythm during the monitor period was in good range between 60 bpm and 130 bpm so advised that the beta blocker should be removed permantly from my prescription. so I am now only on asprin. I saw my surgeon 12 weeks PO but didnt have an echo until 16 wks PO, all was fine. It could be anxiety related as symptoms of both conditions are similar. I will ask for a 7 day monitor if for nothing else but peace of mind.

      Take care

    • derek76
      derek76 maisiejane

      Posted

      To me 130 bpm is a very rapid heart rate. That was my rate when in AF. My normal rate is in the 40's. Even at cardio rehab it did not go much above 90. They say that heart surgery can cause depression but surely patients should be joyous at having been given a second chance of life.

      Do you have a BP monitor? My one indicates irregular beats. My previous one also sounded the beats of the heart and it was easy to know how irregular the beat was. 

      I still have irregular beats but they are ectopic beats that I have had for years.

      Let us know how you get on

       

    • maisiejane
      maisiejane derek76

      Posted

      Hi Derek,

      I have a BP monitor and my regular readings are 110/68 with HR of 68 - 75 it will show irregular beats but has only shown it twice and that was just after surgery.

      I felt very fit prior to surgery - no symptoms,

      Will keep you informed biggrin

    • derek76
      derek76 maisiejane

      Posted

      Did you have aortic stenosis? Mine was found by chance when I had an examination when trying to get on to the BP trial for renal denervation.

      It was only about nine months later while waiting for surgery that any symptoms became noticeable. 

    • maisiejane
      maisiejane derek76

      Posted

      I had Aortic Regurgitation, found I had a heart murmur at a GP appointment - They think I must have had it from birth but they didnt find it until I was 46yrs old! monitored it for 7 years then decided it was time for surgery had a bovine valve as I didnt fancy the tick tick of mechanical. wink
    • derek76
      derek76 maisiejane

      Posted

      I met a woman about your age who had it since birth and had been a professional dancer. One day her GP had a listen to her chest and asked if she knew about it. 

       

    • maisiejane
      maisiejane derek76

      Posted

      Wow! its amazing how we can go through life, having children, operations and medicals and it isnt found then BAM! there it is
    • hugh52255
      hugh52255 maisiejane

      Posted

      Hi Maisiejane. I've had a/f for over 20 years. The Golden Rule is:- If bpm is over 100, go to A&E. under 100, go and lie down. However if it's persistent, ask to see your consultant again. Uncontrolled a/f can cause clots in the centre of the heart and can lead to a stroke. DO NOT treat it too lightly. There are good drugs like Flecainide to control paroxismal a/f and it's your right to have them if you need them. Good Luck.
  • robynfromOz
    robynfromOz maisiejane

    Posted

    Hi Masie Jane. When l go into AF the only symptom usually is that l feel really exhausted. Sometimes l have a funny feeling in my chest- unable to describe it , which my cardiologist says is normal . much better now I'm on Sotolol. Good luck and hope you feel better soon.
    • marco
      marco robynfromOz

      Posted

      Interested in your comment about Sotalol. It did nothing for my PAFib but gave me a scarily slow pulse of 30b/m. Goes to show that drugs affect different people in different ways. Try telling my GP that.
    • maisiejane
      maisiejane robynfromOz

      Posted

      Hi Robyn,

      Thanks for your reply,

      When I feel I am in AF, I am aware of my strong heart beat, but it never seems to go too fast, I can feel dizzy and feel like I dont have enough oxygen getting to my brain ! I get problems with my neck and experience occasional tingling in my face and arm, My Cardio did mention Sotolol to take as and when but she never prescribed it as there was no sign on my 48 hr monitor.

      Take Care

  • Carneuny
    Carneuny maisiejane

    Posted

    Hi there Maisiejane,

    I am assuming you are in UK and my comments are based on that.

    I'm not a Dr so my comments are based only on experience and knowledge gained with this mongrel condition over the last 5 years. So, AF can be and often is all things to all people which makes it hard to treat. If you haven't already done  I would download and print off AF NICE Guidelines CG180. Also DG14, both were published in mid 2014.

    CG180 I feel will answer many of your questions.

    The spin off from AF is that it can lead to a stroke however the risk of this is dependant on a number of factors and can be calculated with the formula CHADSVASC2. If you get onto the Atrial Fibrillation website I think there is a calculator there (you can do it yourself) which will give you a value for your risk - it is safe to say the higher the value the higher the risk and the higher the risk the greater the need for proper  anticoagulation. Asprin is no longer considered the correct anti stroke treatment for persons with AF. See DG14.

    Personally I would scrap these two medical advisors and ask your GP for a referral to an EP (an Electrophysiologist) - a Cardiologist  who specialises in the treatment of heart arrythmias. If he refuses go to your local CCG and make a formal complaint and ask them to do it. The Atrial fibrillation website will also provide you with a list of EP's near to wherever you live. You do have a right to request your own consultant of your choice. Anticoagulation, well the normally accepted is Warfarin or one of the newer drugs known as NOAC's such a Dabigitran. Warfarin is cheaper than NOAC's and has an antidote, the NOAC's have no known antidote at this stage. However, not all people can handle Warfarin so they would or should be offered NOAC's.

    Also some people can be in AF and not know it ! I'm one and it is written in my Cardio consultants report to my GP when I was discharged from hospital. However, the times that I was in AF Iand did feel it it felt like a mob of octupuses wriggling away their tenticles in my chest or a squadron of butterflies in a dogfight, sometimes several squadrons ! Also no energy it would take me 30 to 40  minutes to walk a distance I can now walk in 10 minutes.

    Hope my ramblings here help, any queries just get back to me on here. And ignore your Dr who said stop looking on the internet - used wisely its the only way of keeping the b******s honest  cool  The only reason forums like this exist is because the so called medical professionals aren't doing their job, its not just about diagnosis and treatment but about support to.

    Good luck -

    John

    • derek76
      derek76 Carneuny

      Posted

      As Masiejane and I have had aortic valve replacements the new anticoagulants are contraindicated for us. They are only for patients with non valvular AF.

      Sadly not all cardiologists are aware of that.

    • maisiejane
      maisiejane Carneuny

      Posted

      hi John,

      Thank you for your reply.

      I will down load the AF NICE Guidelines and take a look

      Deb smile

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