Update from EP Visit

Firstly apologies to anyone who was waiting to see the same EP as me today at Harefield, I was with mine for nearly 50 mins, which is I suspect a lot more than time than they usually allocate.

OK results first, no surprises in the 24 hour halter, persistent AF no real change over the day, plus also good news no noticeable enlargement of the left atria from the echocardiogram, still enlarged, but not increased.

So what next steps, we chatted for a long while about the effects of remaining in AF almost without symptoms, his views was that it is almost certainly life shortening, by how much no-one really knows but possible 3 - 5 years, and it's not the AF but cumulative side effects, very high risk of stroke, and/or heart attack.

But should we treat?, and the answer has always been treat the symptoms, not necessarily the AF even though we all know treatment gets harder the longer you have been in AF. And the answer to the symptoms is as I cannot remember being in NSR, do I really have a comparison point? EHRA guidelines still seem to say that only symptomatic AF should be treated agressively, maybe because there there really isn't sufficient data for the long term effects of persistent.

Harefield (with Liverpool) have a new research trial starting comparing catheter and thoracic (surgical) ablations, but I might not even have sufficient symptoms to qualify for that.

So we discussed next steps, and we have agreed that I am going onto amiodarone for at least 3 months, and they will attempt to cardiovert me again in 2 months time. No-one least of all me expects the CV to stick, BUT if they can get me back into NSR with a combination of chemical and electrical cardioverion, for at least say a week, then I will have a baseline comparison point to being in NSR. I should then be able to make a much more informed decision on treatment routes with a goal of NSR (if it is that much better than I am now) He did say he knew patients who had been ablated back into NSR and felt little difference.

So I start tomorrow, usual high loading dose for the first two weeks, and then a daily dosage, and I must admit to being a little scared, I know how powerful this drug is, and how potentially powerful the side effects, although I shall not (hopefully) be on long enough to worry about some of the longer term side effects.

Have to stay out of the sun of course, not that bad in the UK in Feb/Mar and April but for two months afterwards? I might miss both days of our summer this year :)

Anyway I said I would report back, as I know there are others like me out there, can't say I am deliriously happy about taking amiodarone, BUT I do feel we are jointly making positive steps forward with informed joint consent, and surely that's as much as any of us can realistically expect.

Be well

Ian

60 Replies

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  • Hope all goes well with the new meds. Ian. I will keep you in my prayers.

  • I'm glad you got a decent length of time with your E.P.

    I am in A.F. for 70% of the time before going on flecanide. I must admit that it was only when I didn't have A.F. that I realized how bad I had been feeling. I must have gradually been getting used to it. This did help me to decide on an ablation.

    I'm glad you at least seem to have a battle plan.

    Good luck.x

  • Best wishes Ian - sending positive vibes from Sydney Oz

  • I was on Amiodarone for 3 months prior to my ablation and one month post. You will see from my posts that I resisted going on this drug but had confidence in Professor Schilling who asked me to go on it. I had all the checks done that are recommended when taking this drug and had no side effects but would not want to take it long term. I used total sunblock when out in the sun and a brimmed hat and had no problems. I am happy for you Ian as it sounds like you have a good EP who wants the best for you.

  • Good Luck Mr Beancounter, I hope it all goes well for you.

  • Oh my goodness Ian..that is a lot you have been through. You are very brave and seem so pragmatic and positive in the face of all this. Very very warm and best wishes:)

  • Thousands of fingers will be crossed for you Ian. only thé best wishes.

  • I have had similar experience to yourself having been in permanent AF for over a year prior to my ablation in Nov 14. EP put me onto Amiodarone 4 weeks prior to procedure and it got me into NSR in that time. I didn't experience the nasty side effects but did feel breathless and had monthly bloods done to check liver and thyroid etc.

    I went down to 100mg per day in Dec and off it since early Jan. I was happy to be on it but only for a very short period so hopefully you get a benefit from it and a baseline to test against.

    For me coming off beta blockers was like getting back to me pre-AF so good luck and keep us all posted.

  • I think I'm close to persistent and have finally made the decision to go for an ablation. I'm on the list and expect an appointment in April. I had my longest ever AF episode (28 days) back in October and my first and only cardioversion (arranged and performed in just a few days) put me back in NSR at the first jolt. Since then I've had a couple of much shorter AF episodes but they have both reverted to NSR spontaneously. So I'm still 'paroxysmal' but I'm sure that's not going to last much longer.

    When I am in AF I only have one symptom, but it's a big one - huge fatigue! Everything I do physically, is such an effort and having experienced that for a full month, the thought of being like that permanently has convinced me that ablation is the only real option for me.

    Anyway Ian, good luck with your current treatment which I hope will put you back in NSR. You may well have become adjusted to the 'fatigue' over time but I'm sure you will notice a very real increase in energy levels when you're back to normal.

  • I have persistent AF, and wonder if the 'fatigue' you mention is with you all the time, or only after exertion ?

    Mike.

  • All the time, when in AF. And when I'm in AF, exertion anything more than simply walking around, is not really possible. But to contrast that with me when I'm not in AF, I am a fairly fit 67 year old - regular 5 and 10k runner from spring to autumn and an active canoeist. I walked the Lairig Ghru last year - a pretty demanding long distance trans-Cairngorm route.

    I can't do any of those things when in AF though. Hence, the prospect of becoming persistent/permanent fills me with dread.

  • I think I must have always been in persistent AFIB then, as I cannot ever remember a time when I could keep up with the other kids...

  • Good luck with it Ian and thanks for the very informative and interesting post.

    Koll :-)

  • Hi Ian - I've taken Amiodarone quite a lot in the past 4 years. I have to admit I thrive on it and feel extremely well - if only it didn't damage other organs! Whenever I have a cardioversion they put me back on it for a few months before and afterwards and I will admit it helps me to stay in rhythm.

    Best wishes and I do hope your cardioversion works.

    Jean

  • Great to hear you had a long consultation with positive results hopefully! I have been on amiodarone with many others over time! As long as you keep covered and put high factor cream on if you cannot keep out the sun you should be fine.

    My heart and lung consultants are both asking the other to sort me out first but neither is offering a solution?

    Be Well

  • Sounds like a plan Ian. Only an accountant could have a 50 min appointment of course. Got to check the bottom line. Keep positive.

    Bob

  • 50 mins means you have 10 mins left to bill someone else :)

  • Thank you for the information, Ian - very interesting. Best wishes for the future - keep smiling.

  • Hi Ian, It's always difficult deciding on a plan of action but at least you had two good heads agreeing on yours.

    Hope all goes well.

    Angela

  • Fingers crossed that you get a good result with this approach. So much has been written about amiodarone, but it can be highly effective. So off you go Ian, once more into the breach!

  • You and I seem to have exactly the same type of af.....the only other person I know of is my brother....and they say it's not genetic...my father had it too....so I will wait..with baited breath to see your outcome....we have decided to have no more treatment and run with what we have....perhaps we should think again.....

  • Ian,

    I've had a 45 minute consultation with him before , but I paid £250 for it!

    On one of my NHS appointments, he was stuck in traffic and arrived 50 minutes late so once my turn came he was running very late but I still had a lengthy time with him, with no hurry to move on.

    I always say I want to see Dr Hussain himself, if reception say there's no guarantee, I say he said to ask for him, which he did!

    I wouldn't have minded being the patient after you, I take waiting as a sign that the consultant takes all the time needed.

    I think I found reference to those new trials somewhere online a couple of months ago.

    Well it sounds like a plan for you now Ian and we'll all be waiting to see if your CV works. Wouldn't that be nice.

    Hope you're ok on the amiodarone.

    Pat.

  • All the best to you Ian....you are helpful to so many of us. So I won't mar your day by telling of my experience with intravenous amiodarone!

  • Hi Ian, I hope you have fantastic results, I will be thinking of you. I hope you tolerate the medication and NSR happens for you without any side effects. Sending positive thoughts from Melbourne Australia. (wish I got to spend 50 minutes with my EP)

  • Lots of interesting data there Ian. I would be more concerned about the long term (rather than immediate) effects of amiodarone.

    You are very brave to even consider cardioversion.

    Best wishes,

    Mike.

  • Why so fearful of cardioversion Mike? I've never known any other medical intervention that is as simple, painless and effective. There's a huge variation among recipients in how long it lasts of course but, for me at least, the relief of not being in AF was priceless.

  • I've never known what it was like to be able to run or exercise at the same rate as my peers.

    I'm also a coward at heart and any 'fiddling' with the electrical pathways of my heart fills me with dread - especially as it might briefly show me what I've been missing all these years...

    But thanks for showing an interest, that gives me hope for the future.

  • Hi Mike

    Had one CV already, and to be honest it was a doddle, nothing to it and you get a day off in bed :)

    Didn't work of course but it was a doddle.

    Ian

  • You are so brave sending best wishes to you hate this af karen

  • Thanks Ian - what worries me is the 'stroke' risk factor weighed against the remote possibility of a cure.

    Mike

  • They reckon about 1 in 500 cardioversions initiates a stroke and if you were unlucky enough to be that ONE, then you're in the right place for the immediate delivery of stroke busting medication. It's a risk, sure, but sometimes the simple promise of a positive outcome outweighs any risk.

  • I never mind waiting as I like the fact that a proper discussion is underway not just a paper exercise. I wish you well Ian, you give lots of support to others on here.

  • Hi Ian,

    I had my private consultation with Dr.Hussain at the Harefield last week, also a good 50 mins worth, and have to say it was well worth the trip up from the wilds of Somerset.

    Sad to say it's not really practical to sign on to his NHS list and way out of my financial zone to have tests and treatment as a private patient, but I have been pointed in the direction of a consultant that he works with on occasion based down here at Musgrove Hospital in Taunton.

    For the first time since I was diagnosed with AF some two years or so ago, I have a far fuller appreciation of my condition. Most of that taken from my hospital and cardiology reports that I took with me. His conclusion was anyway that my AF was not severe enough to warrant an ablation but advised me to see a "lung doctor", COPD I suppose, giving me a lot to think about and discuss with GP.

    I was a little disappointed at first because I think I had built up my hopes that somehow, at last, I would discover the magic wand that would cure all my ills, but my normal head soon returned and I can honestly say this was the best couple of hundred or so pounds that I have spent in a long while.

    On a brighter note you would certainly improve your fitness levels with the route march from the free car park, and the abundance of tea, biscuits, newspapers etc in the waiting room which far outweigh anything on offer down here.

    All the best with your ongoing treatment,

    Ray

  • Hi Ray

    Tea biscuits? you were in the posh waiting room, ground floor right, the rest of us get water and Sky News with the volume turned off :)

    Route march? it must be all of 30- 40 yds from the car park to the main entrance? Where did they tell you to park? Car park is not that expensive around £4 something for the whole day. You must have parked out by the pond, and yes that's a long walk.

  • Hi, who did he reccomend in Taunton? I am thinking I would like a little chat with somebody but not sure who as last time I was in hospital I saw two different cardiologists so not sure if either are offi cially 'mine'.I didn't understand the letter I was sent and my GP was no help!

  • Hi Buffaly,

    Dr Mark Dayer at Musgrove.

    As I understood from the EP at Harefield they have worked together before and cooperate now that he is down here, he sends them up to Dr Hussain for the op and he sends them back to be looked after.

    I had the same problem with understanding it all when i was first diagnosed in Yeovil, try asking here......Bob only charges a small drink to be left on the bar....and translates hospital letters into plain English, well he did for me and I will get around to buying him that drink one day!!

    Good luck

    Ray

  • Thank you, didn't see him but I was in for suspected heart attack so not surprising.

  • Hi Ian

    You seem to have the same situation as me. I have persistent/permanent AF and can get into NSR through a cardioversion (note that this has been done internally the last 4 times as this has a much higher success rate). But I can only stay in NSR by taking Amiodarone. Having had nearly 8 years in this state (NSR enforced by Amiodarone) I have my baseline

    The last 2 years I've elected to stay in AF as I had to stop the Amiodarone due to deposits in my corneas

    Whilst it was nice to be in NSR for that time and have a nice even rhythm, I can't say for sure that I felt that much better, or was able to do anything that I can't do now I'm back in AF. Essentially my AF is asymptomatic, though I do have difficulty controlling breathing if I exercise too vigourously and always have problems controlling breathing rhythm when swimming (but I think I had this even when I was in NSR)

    What I did find I got was episodes where it seemed like my heart was fighting against the Amiodarone, and I was intensely aware of my heart beating (strongly, but regularly)

    I'd be interested in what your outcome is - I don't know whether to go through the process of evaluating whether to have ablations or not - my last EP advised against them, but that was 5 years ago and maybe things have moved on technically

    lance

  • Ian

    I sure hope the future is a positive one for you. You certainly deserve it. I don`t comment on here very often, but I read daily trying to gain as much knowledge as I can.

    You were the one who got me thinking about enlargement of the left atria when you posted some months ago about your visit with your EP.

    I suppose I was somewhat like you just cruising along in life thinking I am ok I can live with this as I was not seriously considering ablation.

    So Beaner I want to thank you for making me rethink my own situation and I am sure many others on this form. All the best to you.

    Lee

  • Ditto the above, plus, how do I get referral to Harefield?

  • Thanks Ian...very interesting report. I've always wondered about the pros and cons of sticking with PAF if it isn't particularly debilitating.

  • Best wishes Ian, it looks like you are getting the best treatment and hope that you can make a long term decision that enables you to live life to the full. It is 4 months since my cardioversion and although I have had 2 shortish episodes of AF in that time I am, at the moment, in NSR but still feel just as tired and breathless as when in persistent AF. We have very difficult decisions to make with regard to what road to go down and I pray that you make the right one, as I am sure you will. All the best with your treatment plan.

    Brenda

  • I very much enjoyed reading your post and wish I could get someone to sit with me and discuss how I feel and perhaps advise on my treatment. I have been in AF now for 4 months...hard for people to understand just how awful it feels. I'm on the waiting list for cardio but when I asked my GP about seeing an EP her words were "Not easy and not necessary at this point". I do hope your treatment works and you tolerate your new medication. Kind regards - Patricia.

  • Hi Patricia

    Your GP actually has no choice, if you nominate to see an EP she MUST refer you and "on the waiting list" is not really acceptable for anyone who is in AF as you say (literally now in AF persistently?)

    If you are in AF and suffering symptoms now, ask to be referred to the Urgent Chest pain Clinic (turnaround with 2 weeks) and you will see a nurse consultant who will refer you to a Cardio or EP.

    I must admit that doctors (and cardiologists sometimes) who poohoo AF and it's seriousness wind me up.

    Come on girl assert yourself...

    Be well

    Ian

  • Thank you Beancounter - I will phone on Monday and see where I am on the list. If not imminent I will calmly tell my GP I want to see an EP. Patricia.

  • Hi, well you are receiving treatment which Im sure will put your mind at rest

    at least some good news along with a course of treatment which will hopefully prove beneficial. From reading on here you get the impression a

    few people are not keen on Amiodarone but you are aware of that and know

    the risks especially for just a short time. I do hope that it turns out well for

    you and no problems with the medication, Now I want to ask about something that was discussed last week, I now believe my husband has

    persistent af, but from reading your post I get the impression that you are

    aware of symptoms occasionally, he does not have any, ever. He has now

    agreed to consult a cardiologist, after much nagging from me, I just feel

    that after so long a check up would be no bad thing. Do hope everything

    goes to plan. Shirley.

  • Hi Ian, thanks for the comprehensive update, sounds like you and your EP are working well together to find the best treatment for you! I can only echo the comments here in the hope that you continue to do well.

    Best wishes, John

  • Sending all positive thoughts to you.

  • Thanks for that Ian. Good to know that you now have a treatment plan, and hope that it will start to move you forwards in a direction that is both productive and pleasing. All the best! I'm sure we're all hoping to hear good reports of your progress.

  • Best wishes, hope all goes well for you. Kath

  • Hi Ian , hope all goes well this time,I'm in permanent af twenty 4seven with a resting heart rate of 200bpm no nsr what ever, it has caused lvsd heart failureI have no regular heart what so ever, my EF was at 22%, 2 failed CV attempts,asked to see an ep but was told that he can't do anything as the signals are all over the place.am on several rate control drugs ,the only thing that they can try is ablate and pace but that will be in the final stages of heart failure ,my point is I wish you well with the next CV and if any other person here gets the chance to have it and it makes a difference for only 1 year then take it .

  • Good to hear you have a plan Ian. I think you're right about it being an OK drug for short periods.

    Do let us know how it goes!

  • Hi Ian, this all sounds reasonably positive and indeed I hope I all goes according to plan and is good for you. May I ask why they told you to stay out of the Sun for 2 months please? Jim

  • Hi Jim

    Amiodarone causes photo-sensitivity in the skin, and exposure to sunshine can cause the skin to develop a bluey-grey tinge, so they advise you to cover up and also use sun screens at all times even in relatively weak winter sun, and that applies for 2 months after you stop taking it I understand.

    Be well

    Ian

  • All the very best, Ian.

    As you say, 'Be Well'!

  • Im new to this site but would like to wish you well Ian,my journey with AF started with hyper thyroid disease and CV told at that time that it was unlikely to go into AF again especially after my treatment for the thyroid which sent me Hypo thyroid but after 14months last nov went into AF,my referral to cardio wasnot done immediately had to ask,commenced Bisoprol ,my legs became very swollen and painful I now have wounds through leakage and Im on my 2nd course antibiotics.I asked my dr if I was in heart failure? he did tests,bloods and in preparations for me seeing in feb my cardiologist.My excersise tolerance is poor Im SOB on small exertion and feel when I went for my recent ecg HR 140 in AF still and my echo at first he was not going to do it because of the exertion made my readings all over the place but I asked him to give it a few minutes then try again as at rest it settles .Sorry to go on a bit feel really Isolated at times with this problem.Must ask what does EP stand for?Would be grateful for any advice.

  • Hi teri and welcome

    Let's start with the easy question, and EP is an ElectroPhysiologist, a specialist cardiologist who deals with heart rhythm problems, an electrician in a world of plumbers :)

    Thyroid disease and AF have well known links, and if you are suffering from AF you need specialist advice, and that not from a GP if I may be honest, but he sounds to heading you in the right direction, even if an EP would be better than a Cardiologist.

    Bisoprolol, for many of us has proved almost a zombie drug it makes you so tired, but the good news is there are alternatives that will still control heart rate but with less tiredness, and your Cardio will be able to advise on these.

    Ask away any questions this is a friendly forum, I would start a new one rather than linked to this too long one now

    Be well

    Ian

  • Hi Ian

    I've been on Amiodarone for 14 months with a short few weeks break, up to now, fingers crossed no side effects. Still have symptoms daily, even with Bisopralol thrown into the mix.

    Am on the trial you mentioned at Liverpool, should have had a Video Assisted Thorascopic Surgery on Thursday 29.01.15, but has been cancelled due to industrial action, should be soon thought, may find out tomorrow, when I go for an Echo and a specialist nurse appointment. Will let you know how I get on, as this maybe the next step for you.

    Hope whatever happens, you treatment starts to show some results.

    Best Wishes.

    Chris

  • Thanks Chris do let me know how it goes, I will be fascinated.

    Kind regards

    Ian

  • HI Ian

    Thanks for your response and support .

    teri.

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