Everything you always wanted to know about AF but were afraid to ask???!!

Regulars on here will possibly recall my attempts since October 2015, to get my GP to request a review/appt with my Cardiologist (who had discharged me in Jan 2014) to check on my now persistent AF.........GP was quite reluctant even though the best HE could tell me from an ECG I persuaded him to do, was that "You are in AF!!!"...............but dah! dah!..... my persistence paid off and my appt is 16th September.

Now the reason I want this appt, is to see if my AF has progressed ( we are told it does), and also what will happen to me in the future........if this can be told...ie will I end up with heart failure?

I will get my state pension next March and want to make some plans. I get very tired lately but am unsure if its due to AF or just the stress of my job ( NHS administrator) or a bit of both. I am wondering if I should call it a day and retire early. On bad days I wonder if i will make it to retirement and if I should just enjoy the little money I have got put by!!! I am sure other AF'ers must experience these dilemmas!!

Sorry to be long winded.....any suggestions as to what questions I should ask...? Should i try and get an echocardiogram taken.....can you tell if AF has worsened by just an ECG?

Advice please, esp from a volunteer if poss!!!

23 Replies

  • You might want to discuss the possibility of an ablation.

  • Was told 2 years ago that only had 50% chance of success first time and 60% the second....."unless i wanted to run marathons etc., I should stay as I am!!!"

    Felt at time...not worth the risk!

  • I think you will probably guess my view WB and that is to get a referral to one of the two EPs at Queen Alexandra's where there Is a full AF team in the Cardiology unit including an arrhythmia nurse. That's what I was offered by St Mary's with my PAF last year and my appointment came through pretty quickly. I've had two ablations since, with the possibility of a third. Whilst that may not sound great, the reassurance you get from being in the right hands with direct ongoing communication is worth its weight in gold.

    Good luck!

  • Thanks KJ....I will see what MC says.........but see my reply above...... will let you know outcome!

  • Fair enough and obviously ablation may not be the answer. However, as BobD says get yourself to an EP who really understands AF and all the scenarios. As good as MC may be he's still one of Bob's plumbers - at the very least you'll have the knowledge you sought the best possible advice. I'm pretty sure the unit at QA was set up for the likes of you and me so why not take advantage of it.

    I saw the EP last Friday - we still don't know if my ablations have been successful or whether the problem is routed somewhere else than via the pulmonary veins - but he's still on the case and will present further options in 3 months time if I have further periodic episodes.

    Take care and best wishes.

  • AF isn't something that you can quantify really. You have it either all the time or paroxysmally and what affect you is the symptoms. Normally people find that their symptoms become more frequent and last longer but of course if you are asymptomatic you wouldn't know. If you are persistent then it can't really progress from that so you need to find out about on going affects. Long term it can cause heart failure which is measurable by a blood test or it could cause enlarged left atrium (cardiomyopathy) which could be seen on an echocardigram so yes that is a good idea.

    An ECG can't show degrees of AF since by nature any trace of AF is chaotic and there is no measure of chaos by definition. Since all treatment of AF is purely about treating quality of,life you need to go armed with a diary of events. durations. symptoms etc. but since you are persistent that may not be possible. The only two avenues forward would appear to be a change of drug regime (if appropriate) or cardioversion to see if ablation may be an option. Either way you need an EP rather than a plain old plumber.

  • Thanks.....I was told by an EP that as I had been in persistent for more than 6 months.........this was over 2 years ago by the way, then it was very unlikely that a cardioversion would work! And ditto with an ablation!

    A chat with an EP could prove more enlightening though i feel now.....

  • Oh, best of luck with that! Let us know how it goes... It would be interesting to know what questions people think should be asked.

  • When you see your cardio, I would ask if he or she is specialist in heart rhythm disorders, and ask for a referral to one if not. In myq case, nothing ever happens unless I see the specialist.

  • Thanks Koll

  • you need to have an echo so that you can get a baseline evaluation of how your heart is performing as a pump, and whether the AF is distorting valves etc.

    if nothing else this will set a baseline you can measure any future deterioration against

    hope you get a positive outcome


  • Thanks Lance, I can see the sense in that......so think that should be one of my requests/demands!!

  • That was a good question. So, I have been persistent/permanent since May 2015. I was signed off by the NHS cardio, April this year, as cured/fixed. Rate control with 320 mcg Digoxin a day, and 15mg Bisoprolol, a day. These are very large doses, but that is what it takes to get me stable in BP, and HR. I came off Pradaxa with my score at zero, in April. Obviously I am not that happy, and I am very symptomatic, every four weeks, I have a week of chronic fatigue, very breathless, and feeling pretty unwell. It lasts a week, then it is clears as quickly as it came on.. I went to London Bridge, last Tuesday to see Richard Schilling. He will do a full PVI, plus some additional electrical work, but gives me a 40% chance of success. If I leave it another four months, he gives me no chance of a successful ablation. Or, put another way, he can give no guarantees. So, I am currently weighing up what I should do. My dilemma, like yours, is where to go next. My good friend, a Doctor, says, fairly bluntly, that the ablation physically changes you. No reverse. If I stay as I am, then no surgical change, but lifetime meds. My heart appears to be in good shape, and I have little enlargement of the Atria. Mr Schilling could give no guarantee, that even with the ablation, I may still be on meds, certainly Amiodarone, which I promised myself I would never take. That should give you a good guide as to what to ask. Can you let us know how you fare? I am still contemplating what direction to take. Good luck.

  • maxred1 . Did you find out exactly what your doctor friend meant when he said that ablation physically changes you?

    I'm impressed that you are doing everything possible to deal with your heart problem. At the end of the day you will always have the knowledge that you gave it your best shot.

    What did I do when faced with the prospect of the AF getting worse? I had the ablation.

  • Yes I will Maxred1...watch this space, as they say!!

    I too, was discharged as fixed/cured in Jan 2014 because despite being in persistent, my meds (Metoprolol and warfarin) were keeping me fairly stable.

    But of course.....over 2 years on, I am wondering how my heart is coping etc etc., which is why I want to ask questions about heart failure etc.

    Read my other replies re: cardioversion/ablation, but remember that AF seems to be a very "unique to each person" condition.

    I do feel at times i have just been left to get on with it!!

  • Well, you have, as I have been left to get on with it. That's the NHS for you!! I would be tempted to get an echo done, with a follow up ECG by a private consultant. That will show any alteration to your heart, and any enlargement of the atria. My understanding is that is the measure that would give concern. Remember, that if the heart, (pump), is rate controlled, then despite AF, which is the non regularity of the electrical impulses from the atria, then the heart, (pump), is somewhat protected. You would then have a record. I have this, a series of photographs, with an analysis of the Atria size, and heart condition, which I can refer to. I keep it along with my notes folder. Please note I am not medically qualified, and the above is my take on things.

  • Jenny, what he meant was that the physical intrusion of the PVI process means that you have been physically altered. The removal also of the troublesome electrical impulses, is, my understanding, not reverseable. It is not meant as a negative. If you have a CV, it does nothing to physically alter you. Same with meds. But the ablation process, be it sole PVI, or impulse removal, does change your physical make up. It was a discussion he and I had. FWIW, he advises I have the ablation. I may well have it, it's just as always, a crossroads......

  • @Wightbaby Hu!!I nderstand completely. I retired 4 years earlier than I wanted to from a job I really loved due to my as yet then undiagnosed afib. I did not know whaat was going on and the cardiologists, and gp's I saw did not either. GO, RUN to see and electro physiologist--even if you have to see a private doctor if you can afford it. Don't wait. Firstly you should be on anticoagulants. secondly , the longer you are having afib bouts the more the architecture of your heart is changing into an unfavorable situation in which you will have worse afib and possibly other heart ailments. Take care of yourself NOW.

  • Looking at it one way if you have to retire early then you will lose salary. Therefore it is possibles money well spent to see an EP privately at a cost of £150 to £250 if you don't get any joy on the NHS route. Also better sooner than later.

    Whatever you do don't at this point put in writing your retirement date. Not sure whether or not if in the NHS the rules are that you have to go on the date you are entitled to state pension.

    Look at eeking out your holiday entitlement. From memory you are part time so if you do 3 full days look at leaving a couple if hours early on the middle day or even half a day!! After all once you retire they will all be holidays. Where I used to work all holiday time could be in any multiple of 1/4 hour but I knew some organisations look at minimum of 1 hour or half a day.

    You like many of our generation will go into work (or for some still work from home) even though we feel like death warmed up. Consider phoning in sick on those occasions or going home sick during the day.

    Look at your work hours. If on 3 days is it feasible to spread over 4 or juggle the days you work? Don't forget that AF is covered by the disability act (previously the disability and discrimination act).

  • A person of my own heart/thoughts!!! (no pun intended!) Thanks for the advice...esp the last bit about the disability act!! I am seriously considering all you said!!

  • Where can I read the disability act in reference to AF please? Might be useful in relation to work.......thanks in advance!

  • Hi WB, I've had PAF abalation after referral from the IoW nhs, had it done at Portsmouth QA under their team. I was very apprehensive about it at first but cardioversion I felt was only a temporary fix. They told me I could go on 10-15 years without any major problems in AF but I felt the long term effects would be wear and tear on the Heart (Im 41) as I was ticking over at 80-85ish bpm in AF, and now I'm 50ish bpm (according to my fitbit). I bit the bullet and had it done this June, I must say its not a particularly nice thing to have done but I wouldn't hesitate to have it done again (if/when i need it). My three month period is just up and I can report I feel better and my quality of life has definitely improved so far! I still feel tired due to medication but not as bad as before. The success ratio of the operation is not realistic, everyone is different and the way in which they measure the success isn't down to someone being completely cured and med free. If you do decide to have it done and have any questions fire away!

  • Hi Joberton have read your comments about ablation I feel more reassured as to whether to go ahead or not. My age doesnt seem to be a problem its just the awful feeling that it may not be successful. I have spent so many years coping witj AF that I find it hard to accept this course of action msy work!! How old are your children they look delightful. Best wishes

    Gillyflower 13

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