Worried and frustrated

It all feels hopeless. AF is back and feels worse than before the ablation. I am also worried that something may have been damaged, either vagal nerve or oesophagus as I feel very sick all the time and have discomfort when I swallow and some pain dependent on how i move.

I called the ward (as they say call us if you have any concerns), they said go see your GP. So after much debate with the receptionist I have managed to secure an appointment with the Nurse Practioner at 3.35 today, no doctors available apparently.

I also called the cardiologist's secretary as she cancelled my appointment for 12th Jan as I was having my ablation on 27th Jan, she promised to send another appointment, stating that the cardiologist would want to see me within 3 months of the ablation. Nothing came. So having called today I was told no appointment had been sent, one will now be sent but it will likely be for an appointment in July! I see the EP again 29th May!

I'm exhausted, I'm constantly out of breath, I'm in AF more than I am out of it (and yes I know that AF is typically felt whilst in the blanking period) I feel so sick all the time that I can't sleep and really dont want to eat. I don't want to end up in A&E, I really hate hospitals and want to do all i can to stay out of the place, I just want some help through this. But it seems each way I turn I can't get that help.

If this is what it is like for a patient already in the system, it must be hell on earth for someone waiting to be seen for the first time. My frustration is that I am in the system but as soon as one procedure is done, you end up back at the start again. They say I want to see you again in 3 months to see how you are getting on with med changes or review you since the op but then you cant see them for 6 months. I know NHS is struggling, I know I am not the only patient. I am tired, emotional and a little scared and it all feels abit hopeless and pointless right now.

14 Replies

  • Oh dear,I feel so sad for you. When did you have the ablation, could it be the settling down period after your heart having taken a beating during the ablation I wonder. I understand surrounding areas can sometimes be damaged or traumatised during the procedure but it may be these areas also need to settle down too. I can see why you feel so upset and poorly as you are really going through the mill.

    You need answers and sadly you will really have to push for them. I have got much more pushy since I have had this condition which is not my normal style but it has to be. Could you afford to pay for a private appointment with your EP who undertook your ablation so you can get some answers. I know it should not be like this but if it gets you some answers and a way forward (on the NHS of course) then a private one off consultation might be worth it.

    Please hold onto a longer term view as things should settle down (not easy I know), but insist on help, advice and answers now. You should not be left in this way. I despair of the health care system sometimes.

    If you need to go via A&E so be it. I know you don't want too but if all else fails then it will get you back in the system at the sharp end. Have you got good family and friends support to rally round you while you are at your lowest point both physically and emotionally. Remember nothing goes on forever, although it feels like it right now, you will get sorted. Hold on in there. Big hugs.


  • I feel that Dee's advice is excellent. If I were you I would present myself in A&E at a time when Cardiology is fully staffed and operational so that you have a decent chance of being seen by them.

    Your case is a classic example of nobody understanding how ghastly AF makes you feel ie unable to function.

    Best wishes for a speedy improvement..

  • So sorry things are not going well. I was given lansoprazole after my ablation in case of digestive problems, but I don't think I needed it. Your GP - who I hope you will be seeing very soon - may have a useful input that will bring some improvement.

    I found a private appointment with my EP was not expensive and money very well spent (and enabled me not to need my NHS appointment 2 months later) but your GP may refer you anyway. The thing is the speed with which one can have a private appointment. I rang on Friday and an appointment for Tuesday was offered!

    I do hope some progress for you will be swift and you'll start to improve.

  • I think this is completely unacceptable and that you should go to A and e and insist on seeing a cardiologist!!

    Or just tell the hospital where you had the ablation ( probably the best idea) that you are going to turn up and want to see someone about the sickness etc.

    Persist!! let us know how you get on!

  • Hi

    I think you should talk to your healthcare professionals especially as though you feel so unwell and concerned. A&E sounds your best bet of the most expert opinion.

    It is only 2 weeks since your ablation and I'm sharing my experience to give you hope. Although many seem to report going back to work at this stage I was not in this position. I had chest pain for 5 weeks, not continuously always after sleeping and it kept me awake on waking during the night most nights, right on the bra strap/diaphragm. I remember cos I can remember breaking down in slow quiet tears at my mums on her birthday as I was so scared, sleep deprived and unrested. I did have a longish ablation and an angiogram straight after so put it down to that and was beginning to believe that it was going to carry on and was not a short term recovery thing. It cleared up and I can only think that you really can't appreciate how traumatic it is on your heart, especially as you had a painful ablation.

    I have had many various rhythm irregularities since (probably more than before) but no sustained fast AF episodes that I haven't been able to manage with Metoprolol until it reverts. I have an Alivecor and close family and finished work on 31st December so was able to sit everything out until the 3 month review. I asked my EP what I should refer back with during this period and he said if I started to pass out with episodes (although I was in the position of knowing that I didn't have any coronary heart disease) and I had an MRI in the month after (that would have shown other things amiss).

    I'm sorry you feel so down and poorly with it, we have such high hopes of the miraculous ablation but as my EP said last week it is a war not a battle. I'm sure you are at a low point and things will improve from here just seek the help you think you need.

    Take good care.


  • 'It is a war not a battle' says so much.

  • Also I saw EP last Friday for 3 month review and seeing cardiologist in March (not seen him since last summer in hospital) so I wouldn't worry about that.

  • I'm waiting to hear how you get on at your docs appointment. Some good advice above for you from our lovely forum members.

    Wishing you well and a big healing hug.


  • Update: The nurse practioner was great. I did get a bit emotional and she was very understanding. She has given me some antisickness tablets and whilst I was with her rang through to the EP's secretary. She told her how I was feeling. The EP is away currently but back next week and she is going to sort an appointment for him to see me regarding the pain and sickness that I am experiencing. I know the heart rate is expected to fluctuate and have bouts of AF, but she thinks he should see me as soon as possible as it is worse than it was before.

    So i feel happier than i did this morning. They have signed me off for another couple of weeks from work as the Nurse Practioner felt that I was to exhausted and uncomfortable to go back to work as yet. ( I was due back on Monday, so I will have to break that news to my boss. Fortunately they are very understanding, but I didnt expect to be off for a month with this).

    Can I thank you all for your responses and kind thoughts and encouragement, you really have been very helpful in making me be realistic and I know this isnt forever. I think i just got lost in the tiredness and sickness. So thank you :)

  • So glad things are moving and going in the right direction. All the best!

  • Good next steps.

    I was off for a month and it didn't worry me in the slightest, got my priorities right in the last 12 months and feeling better has to be up there.

    Continue to listen to your own body, not everyone has the same experience and there can be an expectaion to tough it out.


  • I second some of the comments made here, if you need to go to A&E, then go.

    In the past I have, I always start by saying "Im sorry to be bothering you BUT I have a pulse rate of 180 beats per minute and pain in my chest"

    You usually get seen pretty much straight away.

    I hated doing it, but if you ring your GP and try and follow the rules you get nowhere fast.

    I called NHS direct once with a high heart rate and pains in my chest, this was a Friday night. I got told to call my GP on Monday morning. By Sunday Morning I was in A&E being chemically cardioverted.

    The sad thing is if you were stinking rich you would be treated MUCH much better.....

  • So sorry to hear about your experience. Can you keep updating us on your progress? If this is a "settling in" period then I wonder how common the experience is? It does not sound easy. I would be interested in opinions / comments from people who have gone through an ablation in which the first one did not improve matters (Bob?) - I gather some people have had 2-3 and things improved dramatically after the first ablation.

  • When I had a scare, I emailed the EP at the hospital (phoned his secretary for his e mail address but check he's not on leave when you ring) and one of his team rang me back that afternoon offering advice. It's worth a try. Failing any help, then try the private route. It cost me £54 for an ECG he insists on before seeing anyone, £50 for him to interpret it and £200 for the consultation. I felt the money well spent as I had his undivided attention. I do hope you're feeling a bit better. It's so frightening and I know how alone you can feel. Keep us posted on your progress. Jenny

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