Nervous patient to say the least

I am almost certainly going over old ground here. I have had Paroxysmal AF for several years and recently increasing in frequency and duration. I saw a very good specialist at Oxford and we changed my medication to include Flecainide. Unfortunately this seems not to have worked with the last month I have had four episodes lasting over 36 hours. I have found my resilience to have faded thinking I could live with AF, but I am not to sure I can. I have contacted my specialist and asked to go ahead with an Ablation and he is arranging a date soon. I feel so nervous about having the procedure but feel what options do I have. Are my feeling normal I feel so alone.

25 Replies

  • Hi Steve

    Well firstly you are not alone, 1412 members on this forum would disagree with you :)

    But of course that does not stop you feeling alone, and it sounds to me like you are in really good hands with your specialist at Oxford (good reputation for A Fib there) and under treatment.

    I can't comment on the ablation as I have never had one, but plenty here have and will be more than happy to share their experiences I am sure.

    Also be aware there is a 24 hours helpline available from the AFA, 01789 451837, do use them, the staff on the other end of the phone are very well versed with all things AF, and they will help and reassure you. Perhaps try first in working hours, but it is 24 hour.

    Lastly we are here for you, on those bad nights, there's almost always someone in the forum who will just talk to you if that is that you need.

    Be well and do post often, you'd be amazed how much empathy can help you


  • Your feelings are the same as mine and lots of others on here so are probably normal! I too am facing an ablation sometime soon and am torn between sheer terror and being pleased to have the opportunity to have the procedure. Most people say it is nothing to worry about so I am holding on to that thought! You must never feel alone, just come on here when you do and there will always be someone who will understand and try to help. X

  • Ablation IS something to worry about. Don't feel bad about being scared. They are going to invade the inside of your heart and something might go wrong - very very rarely. It's slightly dangerous, but so is crossing the road. The other side of the ablation road is very attractive, believe me. The success rate is very high indeed with a one in a thousand chance of disaster - or thereabouts.

    How they manage to do so much with so little disturbance I don't know. No pain, so much gain.

    I've had two ablations without any problems and would have no hesitation in signing up for a third.

    Almost seven weeks on from the second one, I have had only one tiny wobble in the heart rate, and have just reduced my flecainide dose to 50mg morning and 100mg at night to see what happens. I was taking 150mg twice a day and having AF attacks almost on a weekly basis. They reduced my flecainide dose by 100mg after the procedure and I was thrilled to bits. If it can be cut out altogether I will be over the moon.

  • Steve_D

    Maybe now is the time to get the ablation, as your Af seems to be getting more frequent, you have little or no control over these episodes... (if only) and you run the risk of Paf becoming permanent, only you can decide but there are many here who have been faced with the same decision,

    for me personally, ablation (9 months ago) has transformed my life, this could also be one of the best decisions you ever make, and yes it is something to be concerned or worried about,

    but it’s a common everyday procedure ,a well-oiled machine patients in and out all day long, not a big deal for the people who perform this stuff, they don’t break out in a sweat, but we probably and understandably worry far too much and that includes me to

    Good luck

  • Hello I to was in your position , I had my first ablation in jan this yr .i was really worried like you , especially when I was told about the risks .but there was really no need to worry ,I did have a very small bleed after procedure but everything else was fine ,I also had mine done at Oxford . The staff were so understanding of my worriers . I'm so glad I went for ablation now . But I really do understand how you feel right now . Hope all goes well for you .

  • I've already replied to Dedeottie, but would add that the ablation procedure itself has, for me, been a very painless one, and if it is done early in the day, you can get home later on. It really doesn't feel as intrusive as it actually is. It is a big step to take, yes, and your fears are not misplaced. It is the logical step forward if medication is failing to keep AF in check and there's real potential to transform your life.

    I hope this will give you some encouragement - don't feel you are on your own!

  • My sincere thanks to everyone for the reassurances, the other thing I find difficult is that when I am not in AF I feel fine and question should I go for it. Then an episode starts and I soon realise why I have made the decision.

  • Hi Steve, I read your question whilst eating breakfast and I thought "I could have written this. It' s exactly my position." Then I read the wonderfully supportive answers which have really set me up for the day. Depending on waiting lists our treatments may be in parallel. Let us know how you get on. Best wishes.

  • Steve, we would be a bit irresponsible if we were to dive into an ablation without hesitation. Now all that said, I had to arrive at the point, as are you, where quality of life was an issue. At that point, I felt it was worth the "risk". Talking about risks, any surgery has similar risks, so does crossing the street. The problem is we are talking about letting someone enter into our heart so it sounds so much worse! As I said once before, our hearts are a muscle, strong, solid, ours just dance a bit more. They can take this walk in the atria!

    I wanted to be a doctor, I loved watching surgery, my ablation was done under conscious sedation so I was both nervous and curious! I can tell you from having "been" there - consciously, it isn't at all what we fear. But to fear is normal. Go for it Steve, the percentages of success are high and the insurance companies would not be paying for this procedure if there weren't good statistics behind it! Take good care, keep us posted.

  • Hi Steve and you are quite normal. Your route here is classic. Denial, I can live with this, Oh dear it is getting the better of me. etc but you have taken the first big step in sorting out your problems by accepting the inevitable and asking for ablation. Please don;t worry about the procedure. I have yet to met anybody who wishes that that hadn't had one! It all sounds very scary but it is not a difficult procedure to endure and with luck you will be with the fairies whilst it happens. Bloody hard work for the poor EP mind you. My best advice would be to stop worrying and embrace it. Do take plenty of time to recover afterwards and don't worry if you still get a few events afterwards as it does take time for the heart to settle down,

    Well done so far.


  • my cardiologist told me to wait as long as possible before getting an ablation. He believes that the technology is improving all the time and will be much better in 10 years. After totally failing four different drugs for rhythm control and being very symptomatic he was then quite happy to go down the ablation route. My ablation is just over two weeks away and I am very nervous. Like you say when you don't have af you wonder if you should go ahead, but when you do have it can't come soon enough.

  • Hi Steve,

    Hope you are feeling more positive after reading all these reassuring replies. I had my first ablation at the end of last year, I felt so much better immediately after and now feel like the person I used to be - so it wasn't just 'growing older' after all. My Professor EP is a big believer in early ablation and played down the risks. Thank god! We are so lucky to have procedures like this available to us but, thanks to sedation, you won't see much of it !

    Good Luck

  • I have had 3 ablations 12 CV and have found them all fascinating (Maybe I am a bit strange) Do not take the fact I have had 3 I was diagnosed in 1992 but had had the condition for at least 10 years before and told to live with it! Which I did.

    The success rate then was 20% AF Free and only 2 hospital outside London that did them. They are improving every year. My last one was done by a doctor trained by the doctor that did my first 2. I have other problems that are not helping my AF but it can change your life. Being nervous is not a bad thing it makes you ask questions.

    Be Well

  • Hi Steve

    Your message reminds me very much of how poorly and really unwell I was with PAF 5 or 6 years ago. It was ruining my life because I had to keep cancelling arrangements when I had an episode. When it got to the point that I was spending most of my time asleep on my sofa my EP put me down for an ablation. Subsequently I had 3, and a pacemaker. The last one was in July 2013 and I'm happy to report that I haven't had any AF since. You have as good a chance as anybody else of getting better. Very good luck, and try not to worry.

  • I had my first ablation 5 weeks ago, following a long and rocky journey since my first episode and diagnosis in 1998. Long story short: I found the experience, under sedation, not too unpleasant, I was given a wonderful cocktail of drugs to keep me amused and kept nodding off. The procedure took 4 hours, the worst thing was that I was dying for a pee - was offered a bedpan whilst in the Lab, which I declined. I was home next day and spend the next few days elated with the thought that I would be ok from now, unfortunately day 5 it returned, I am now taking Flecainide which has not done what it sez on the tin, so to speak. I am now waiting for a further appointment an reckon another Ablation will be on the cards eventually. Prior to my first procedure I had a TOE, they found that I had a hole in my heart (I am 65) and I was more concerned that than the actual Ablation, I still have the hole as it was quite small, this is quite common

    apparently. Do not be too concerned about the procedure, you will be in good hands, and will wonder afterwards why you were apprehensive.

  • Hi Steve. No sane person would go for an ablation and not be nervous about it. It is a serious procedure with risks (albeit low) so what you are experiencing is normal. Like you, I made the decision to go ahead but kept having doubts. In fact on the morning of the ablation whilst in the waiting area I considered going home. Anyway I went ahead last November and 5 months later I feel really well and off all meds except warfarin. Should it come back I will do it again (but will still be worried). The procedure itself is painless and I had no pain or discomfort afterwards. So my advice is go ahead and accept that you will be afraid but that the result will be worth it. Best of luck. Marie

  • Hi Steve_D,I,ll keep it short and sweet,it,s a piece of cake don,t worry it,ll be over before you know it good luck

  • Thank you for all the support it really does make it feel more tolerable.

  • Hi Steve. I'm having my ablation next Thursday and I'm really quite nervous so you're no alone. My worries are whether it'll be successful the first time or whether I'll need a second go and if I think it's worked and stop the warfarin, then I'll have to start from scratch with that too and it took 5 weeks to get to the therapeutic levels. I tell you - this whole thing is taking over my life!

  • Hi Sue I know exactly what you mean, if only others really new how it makes you feel. It always seems to start for me when I am having fun traveling. In Rome at the moment and an attack has come on. I am ok but it seems to make walking difficult. As nervous as I am I cannot wait for the op so I can get back to fully enjoying my travels.

    I know all will go well on Thursday and Friday life starts again for you. I have resolved myself that a second one will be required and it will be a bonus if not.

  • Thanks Steve - I've also just read your earlier comment about when you're not in AF you wonder whether ablation is right and I so understand those feelings as well. Because when your hearts doing what it should then you think ’why mess with it'. The. It comes on again and you know exactly why you're doing it.

  • Steve D just got my letter from my EP and he said at the end this woman is terrified of undergoing the procedure so I am doing it under general and me both..

  • Hi Loo

    It's three weeks since my operation and I was petrified prior to my op. I took a lot of assurances from the guys on here that it will be all ok and guess what it was fine. Other advice I was give is was to take it easy after the op and guess what they were right again. You will be fine and let us know how it goes. xx

  • Thanks SteveD great to know that and well done to you. I know I'm in good hands both for my ablation and on here.....x

  • I was very nervous about it too but had one three weeks ago. It was fine. Had some bruising at top of leg and a little chest pain after like acid reflux but not much. Had bit low blood pressure but that came up with food and water. Had a general and when I woke was fine. Now in AF only few blips and feel much better.

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