A/F diagnosis Help

hi I was diagnosed with a/f at the age of 37 but I am sure I had it for a lot longer I kept having a racing heart and palpitations a couple of years before that but every time I went to the gp they did not believe me they even at one point saying I should go on anti depressants

they honestly thought I was making up my symptoms why I just do not know. eventually I was admitted to hospital one early morning after driving myself there and within 30 min I was told I had A/F by a French doctor who reassured me I would be fine he explained his own mother has had it for years so that calmed me a little and stopped me thinking I was going to die there and then. I seen the heart surgeon in Manchester as I would not use my own local hospital as it has a very bad reputation and has been in special measures for some years. I eventually had the ablation and everything seemed to calm down I have had a couple of incidents of af recently so I'm guessing the ablation did not work on me but when I go for the tests and the heart monitoring my heart dosent seem to go in to af so they can record it . so I am in a situation again that I don't think I am being believed I know my own body and I know when something is wrong anyone got any advice they could share?

7 Replies

  • Hello Hayden, I see that you have only just joined the forum so welcome. I'm don't know how long ago you had your ablation, but it can take up to 6 months for the heart to heal and episodes of AF often happen during that period. Can I suggest you contact the Arrythmia Nurse at the hospital where you had the procedure as they may be happy to see you about your current problems. You will see from the posts, some folk have had three or more ablations before their AF is resolved, so try not to be too disheartened. Hope this helps, best wishes, John

  • Hi, how long ago was your ablation? It takes 6 months for the heart to fully heal and fully behave. Have you considered asking to wear a monitor which would record for a period of time? The other option is to purchase a Kardia device which would mean you can record an ECG when you know an episode is happening.

  • Might be that you had it earlier. My flutter was found 2 years ago but I'm pretty sure that I had some rare occasions even before may twenties. My mother had afib, my father likely had so it is my genetics. My echo basically proofed that I have HCM, that is a genetic constellation.

    Concerning the ablation. Unfortunately in some cases the ablation can perfectly eliminate the pathological muscle structures, so you never will get anymore fibrillation BUT if too much muscle was pathological then you lost substantial part of your atrial muscle. Therefore the atrium became "weak" and can't pump the blood. So you will experince the symptoms of aFib without the presence a real, ECG detectable aFib. What to in this case? Your cardiologist should handle somehow the problem.

  • Hi hayden28, I'm sure you must be really frustrated by now being fobbed off by the medical profession so often. I'm guessing that they don't perhaps expect someone who presents with AF to be as young as you, but that's not acceptable, as your experience has shown.

    It does seem to be par for the course that when you need to be in AF just to prove it then your heart doesn't play ball, which makes it dfficult to verify. This is not uncommon so the suggestion of either purchasing a Kardia device (really useful - search it online) or possibly asking for a 7-day monitor to be fitted does seem to be the best way to move forward.

    Having said that, it doesn't always follow that a couple of episodes of AF now and then mean an unsuccessful ablation, unless you had it some years ago. Be kind to yourself when these happen, don't try to push yourself to do too much, and persevere with finding a way forward by perhaps contacting an arrhythmia nurse at the hospital where you had the ablation done and explaining what your symptoms are and what to do next.

    I wish you all the best and hope you get some good help very soon. Kate

  • Hi everyone thanks for your reply's I had my ablation done around two years ago I did have a couple of episodes after the ablation but things calmed down. but recently started up again I have had the 7 day monitoring but nothing showed up as I did not have a episode of af that week but the day after I handed it back in I was in af so your right when you say at times when you need your heart to play ball to prove it then it doesn't. I will look in to purchasing cardia device I did not know you could buy them . I am very reluctant to take the Add to dictionary as it drains me for a whole day afterwards I am still on warfarin and propranolol so I think I'm safe for now it is just very frustrating as I am sure the heart surgeon is when he wants to help but cant do another ablation until they see the af which is quite right. thanks for your advice and I will contact the arrhythmia nurse at Manchester and see what advice they can give me to

  • I would second the advice about getting kardia machine. My EP found it useful to see the printouts of AF episodes i captured on the device.

    As you know from reading on here, ablation is a treatment not a cure so even two years being AF free is good. It is not unusual for it to come back but hopefully a second one will help keep it under control for a few moire years.

    I am 3 years post ablation and AF free and i am grateful foir each noirmal day i have. Good luck 🍀

  • Hi Hayden28,

    I share your frustration as being misdiagnosed. My GP wanted to placed me on anti depressants too. I apparently had this problem for years but I've been told it was anxieties. So I believe my doctor for a while but I kept having palpitations and felt it was something worst. I found out 8 years later the true source of my symptoms was AF. I'm 44 years old now and was just correctly diagnosed last November. However, I always felt I had a heart issue but I was made to feel like I was crazy by most doctors. Just like you , I too know my body and know when it's not normal. Ive learned we have to be our own advocate sometimes. I'm currently taking Metroplol twice a day and it seems to be working. But I'm contemplating in possibly having an ablation in the next few months because I still on occasion feel shortness of breath, fatigue and missed beats. No so much rapid heart beat but on occasions. I pray all works out for you. The best thing I did was listen to my body. Second best thing was to of found this forum. Everyone is so supportive and it makes me feel better that I'm not alone. Third best thing was the advice I got to go in the AFA website. I found it very informative and it gave me a sense of peace and I would get through this.

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