Help, I need advice

Hello everyone, I am new to this wonderful forum where I have read so many post that have for me been very enlightening regarding AF. I was diagnosed with Atrial Tachycardia about ten years ago after an EP study and put on 10mg of propranolol to help with the arrhythmia but, as time went on the Tachycardia got worse and with it indescribable anxiety. I was referred back to an EP consultant who arrange for me to have a an ablation, which I had on the 27th November 2014 but, without success. Just as the Ablation was about to go ahead the EP doctor suddenly appeared at my side to tell me that they had trigged AF and because of that they would not be able to go ahead with the ablation instead they would have to sedate me immediately and then cardiovert my heart back into sinus rhythm which they did and which meant a overnight stay in the cardiac ward. The next morning I was told that I could go home. As you can imagine I was not as alert as I should have been in fact I was in shock ( excuse the pun ) regarding the thought that I had gone to hospital to get rid of one arrhythmia and had somehow acquired another.

I was allowed to leave hospital after this trauma without any advice or medication for this now newly acquired arrhythmia called AF and no further appointment. Since that day I have had two episodes which have terrified me causing me even more anxiety than I had before. The hospital in question is Kings college which to this day I have not heard a word from. I am now desperate to try and sort things out for myself and at 67 I feel having read much recently about AF I might be in the danger zone for a stroke.

I must say that from the time that I entered the EP lab things were not right. I was not given any relaxant and was at times in pain especially my throat but no one was interested when I told them this. what really worries me is that I was used for training doctors as their seemed to be a lot of explaining going on and different people working on me regarding the catheters in my heart. I did ring the arrhythmia nurse a few days later and she seemed surprised that this had happened to me, but she did ask the EP consultant to call me back but he was vague to say the least regarding my ablation being a training session which I know that doctors have to train but I thought that I would be informed if this was the case and, so as you can imagine that day was a nightmare for me and has made me fearful of having another ablation so not only have I now got AF on top of the Atrial Tachycardia I also have fear and anxiety because of the way that I was treated. I did go to my GP but he just shook his head and said I must get in touch with the hospital make an appointment and go back. I am wondering if their is anyone else who may have had a similar experience or am I an isolated case and, if so where do I go from here as I am at my wits end.

15 Replies

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  • It seems to me you have been treated very badly indeed, surely you should

    have an explantion at the very least. Maybe others on this site will be able

    to help but I would not return to the same hospital for any further treatment,other than an explanation from the EP.

  • Thank you for getting back to me, at least now I don't feel so alone with this condition, I am now seeking some resolution for myself so I can at least be medicated for the AF and also anti coagulation medication, but I need to find out why I was treated in such a cold and uncaring manner and just left to get on with it without any help from the doctors. which means I shall be writing to the complaints department of kings for and explanation.

  • Not exactly the same situation as yours but I was very callously treated during an angiogram, despite advising the doctors of previous problems. With several years of hindsight, I wish I had made a formal complaint as it has coloured my judgement of the medical profession ever since and is in my notes as having hampered later treatment.

    Can I suggest that in the first instance you contact the PALS (Patient Advice and Liaison Service) at the hospital? I would also make sure that you write down everything that you remember while it is still fresh on your mind - names, dates, times, what happened.

    I know people don't like to make a fuss and find it difficult to challenge the medical profession but I think you will regret it in the future unless you attempt to get a resolution.

  • Don't faint Mrspat but I agree with all of that! lol

    Flipflop whilst I understand your fear and anxiety which is very common in us AFers for the most parts it is unfounded. Not that that will help you right now. A formal letter of complaint may not sort out your arrhythmias but it should make you feel better and help you regain control. Loss of control is a major factor in anxiety. There are also plenty of lawyers who would love to take on a case like that (medical malpractice) on a no win no fee basis although frankly I don't approve of that sort of thing.

    Now what to do next. I would look around for another EP at another hospital. There is a list of specialists under patient information on the main AF Association website. Once you have found one near you there are two ways forward. You can ring their secretary and ask for a private appointment to discuss your case after which get transferred to NHS. It may cost you £200 but what price your health. The other way is to ask your GP to refer you to this EP although obviously this will take much longer.

    From what you say I can only guess that the EP concerned was not trained to perform PVI type ablation for AF as this is much more complex than say SVT or flutter. Please do not be permanently put off by this experience as I do believe that you can have successful treatment which will either stop your symptoms altogether or at least reduce them.

    One thing you MUST do right now is make an appointment with your doctor to discuss ant-coagulation whether warfarin or one of the newer drugs. Having AF makes you five times more likely to have a stroke than somebody without it regardless of any other risks factors. At your age you really should be on one "end of "as my boys would say. If you look again at AFA website there is something called CHADSVASC which you can look up and work out your score against which you can see if you need it or not. Since you already score 1 for age alone I suspect the answer is YES . Any other questions just ask and we will try to help.

    Finally may I suggest that you speak to your GP about dealing with the anxiety either by CBT , hypnosis or as a last resort maybe a short course of drugs.

    Bob

  • Thank you for your reply Bob, I have started my letter of complaint to PALS , and will go into battle to try and get some medication for the AF which is making me feel very unwell.

    I am doing my best to cope with the anxiety but it is difficult when no one will help medically. I am so shocked that I or anyone with this condition can be treated this way, but I will also take your advice and see someone privately ASAP as it seems the only option for me at the moment.

    flipflop.

  • Thank you so much for your advice. I have started my letter to PALS and also to the (HDA )Honoured Doctors Association to see if someone can help me get some treatment for the AF and some blood thinners as my GP does not seem to want to know either at the moment. Oh what a mess.

  • Apparently my heart started to fibrillate during my ablation and I had to have cardioversion. I didn't know anything about it as I had a general anaesthetic. The EP told me about it when he came to see me afterwards. I asked if the AF had helped, thinking that it would have indicated the fault, but he replied " Not really." It certainly didn't seem to be a big deal to him.

  • Hi Flipflop. Do feel that things can improve. I've found much of what you've written is familiar, but I've not had any of the really bad bits. My first ablation - for paroxysmal super ventricular tachycardia - didn't go too well and I woke to find I'd slipped into atrial fibrillation (which I'd not heard of) and had had 6 cardioversions (so I no longer was in AF) and was sent home that afternoon with some flecainide which I was to take for 3 months. No more tachycardia, no AF! It was good, but after 3 months, when I was to halve the flecainide, I went into AF again and so was told to continue to take it as before. No mention of anticoagulation - I was under 65. Life continued for almost a year without problem and without hospital visits, then AF crept in a bit now and then. Not a big problem. A couple of years later it was more frequent and, cutting the story short, I was referred to a cardiologist and ended up not happy, on extra flecainide, on warfarin and waiting for an appointment with an EP. He offered a second ablation. It's worked a treat! No flecainide now, no AF, although it took a while to die down. I'm so much better than I was a year ago, so just believe there can be light at the end of this nasty tunnel. If I were you I'd turn the page and start again somewhere else, following Bob's suggestion, and see what advice a different EP can offer.

  • PS It doesn't cost the earth (£100 - 250) to see an EP privately, discuss your situation and move forward. Several of us have done this and found it money well spent. You don't have to be referred by your GP and you can subsequently slip back into NHS care. I rang my EP's NHS secretary and she gave me his private secretary's number. When I rang her she offered me an appointment four days later. Your nearest Spire hospital may be able to help.

  • Thank you for your advice Rellim296. Everyone has been so kind in all there advice and so knowledgeable I will be forever grateful that I found this forum, all the reply's that I have received back have been so positive they have made me feel so much better and I have taken on board all this invaluable advice and will act on it. so thank you once again.

    flipflop

  • Sorry to hear of your bad experience, I have not heard of the process you are talking about as I am from Australia, however I do know my EP is retiring and the person he is training is already fully fledged. As for your condition like everyone else will say, you need to get it sorted, get to see an EP and a cardiologist if you can, as the life of an AFer is hard without the correct information, drugs and knowledge. Good Luck

  • Thank you for your reply soozie12 what you say is so true without the correct info or drugs its hopeless . I am going to try and see another EP privately as that is my only hope at the moment. What a annoying condition AF is I want my life back it seems to have come to a full stop and I feel that I am in limbo, if it wasn't for this forum I would still be in the dark, so now I am rearing to go and war on the hospital that threw me to one side if I don't they will continue to behave in this way and so I feel it should be brought to light what happened to me to make sure that it doesn't happen to anyone else., so they will be receiving a letter of complaint very soon.

    flipflop

  • I like your attitude, I too am a stirrer and if needed will stir the doctors up. If you dont you wont get anywhere and if you do they damn well know you will and may either block you or give you the royal treatment. The best thing about AF is that unless you have other ticker problems it may not kill. After seeing my EP and telling him about my heart failure and visit to A&E, well it was to me at the time, he said they discounted heart failure so why the bloody hell am I sitting on my bum, get out there and do something before you do turn your toes up, gotta love a forceful man. Just be strong, and roll with the punches.

  • My first ablation was at Kings College but my experience with the Consultant was not a pleasant one so I switched hospitals. I did my research via AF association and then back to my heart consultant locally, who unfortunately has now left the area, but he was brilliant in understanding and referred me to the hospital I had requested.

  • Hello Independ, thank you for your reply and advice as from everyone on the forum who has replied to me the advice and guidance has been fantastic and really made me feel so much better. The AF episodes have frightened me but, I know now that I am not alone.

    I am taking on board every bit of advice that I have had back and will act on it as like everyone with this condition I want to feel as well as I can and symptom free as much as possible. This coming week is going to be a busy one for me sorting things out with my GP letters to write of complaint regarding my treatment at the hands of the EP doctor at Kings college who has just left me with nothing which shocks me as I always thought that Kings College Hospital was a cutting edge hospital how wrong could I have been. I will also look to see an EP doctor privately. I must have some meds for this AF and the sooner I can go on medication the better it will be for me as the symptoms are just too debilitating. It is early days for me and I am beginning to learn what being an AF suffer means and look forward to things in the future getting better hopefully .

    flipflop

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