Diagnosed December 2015, possible ablation April 2016

Diagnosed December 2015, possible ablation April 2016

First of all, thank all of you who have related all your personal experiences of AFib on this site. I have found it enormously helpful reading all your posts in this forum.

I am 65, not overweight, active (walk between 20 and 30 miles per week), have a healthy diet and suffered from nothing more than being content and rather smug with my lot - I thought I was doing all the right things to lead to a healthy old age.

Until December. I awoke feeling distinctly unwell, I just couldn't place what was wrong, I thought I had been lying awkwardly and perhaps strained my back and chest. I walked two miles my daughter's to pick up my grandson, and the family immediately noticed my ashen face. Instead of going to work, my daughter packed me, my two dogs and my grandson in the car and took me straight round to my GP. An hour later I sat as he took my pulse and listened intently and told me immediately he thought I had AFib. The surgery has facilities and within minutes I had an ECG which confirmed his diagnosis. Having being diagnosed with mild SVT (no treatment) three years ago, I was quite blase about what he told me. I cannot fault my treatment - I think my GP knew it hadn't sunk in and he said to come back later that week with a member of my family to go through the diagnosis, and explained that he was immediately putting me on warfarin and 2.5mg Bisoprolol.

Three days later (after much googling and many, many horror stories) the reality had sunk in and I was in complete shock. That day I was back in the surgery at the INR clinic to test have my levels tested and on seeing my distress the nurse called the same GP through and he sat with me for fifteen minutes explaining about AFib. Within two weeks I had an echocardiogram, and the week after that had an hour-long consultation in the arrhythmia clinic with the specialist nurse. My results showed my heart was normal with only very minor changes. It was at this point that I remembered having severe indigestion in September and I recognised that this was undoubtedly AFib as well. After the nurse explaining various treatment options he asked if I would like to be considered for the 'AVATAR' trial, where a group of AFib sufferers (fulfilling certain criteria) is randomly divided into three groups, one for medication only and two for ablation.

I was absolutely torn. I had had no further episodes, and ablation (if I was in one of those groups) came with risks. However, this week, in the car on the way to my first appointment for the AVATAR trial, I idly tested myself on 'Alivecor' (my husband got this for me so I felt more in control). For the first time, the reading was going haywire. I had practically no symptoms. When I saw the research cardiologist just over an hour later, he looked at the ECG and confirmed AFib. Furthermore, he is following up the investigations I had in 2012 as he feels certain is was AFib then. In the last three days I have gone into AF at least twice a day, with much more obvious symptoms - heart rate 115, and feeling faint and ill.

In three or so weeks I shall know which AVATAR group I am in, and should it be ablation, then the procedure would be carried out on April 5th. If my symptoms do not improve then a second ablation would be carried out on 21st June. The cardiologist was at pains to reassure me that I could drop out of the trial at any time if I was unsure, that my ablation wouldn't be in any way an 'experiment' and any procedure would be carried out by an experienced EP.

I am so aware that many AFib sufferers have gone and are going through so much more than me and my AFib journey has been relatively easy up until now. I know that ultimately I will have to make a decision - I feel as if I am on an express train hurtling towards a destination I am ill-prepared for. However, I am also aware that research shows the earlier the intervention the better the outcome. Some research suggests that, for certain cases, first-line treatment should be ablation.

Sorry for this very long and involved account!

I would welcome your thoughts.

23 Replies

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  • I didn't mean that photograph to appear on my post - it should be on my profile. Just getting used to all this.

  • Hi it seems you are juggling a lot of AF plates at the moment No wonder you want to stop the bus and get off! I too was offered the AVATAR trial -but turned it down as got my original ablation date the same week after waitng 8mths !make sure you read all the info for it a few times as it took a While for me understand what the trial was trying to achieve .the good thing about it is that you will have great care which ever path you follow and be very closely monitored and followed up-this will be much better than I suspect a majority of AFers get ! At least your time frames for treatment will be shorter . I have never regretted my ablation although the recovery can be a bit bumpy my symptoms are better .i think you just need a bit of space and time to process all this new stuff and I think you will feel clearer when you know which arm of the trual you are .Good luck , at the beginning AF seems overwhelming but you can get a semblance of control over it and not feel so alone this forum really helps with that xxx

  • Welcome Irene - so sorry you are here too. The photo is gorgeous!

    I can relate to everything you write and diagnosis is a real shock to our belief that we are healthy and were doing OK. I was convinced I would die at any moment after diagnosis a couple of years ago. The good news is that your medical care has been fast and efficient both from your family and professionals and you have been given a advice about possible options.

    Being part of a study can have very positive aspects - the monitoring and follow-ups appeal to me, especially in areas where waiting lists are long. The important thing is to inform yourself about all aspects both of drug treatment and ablation so that you can question, question and question again and be mentally ready to accept the grouping to which you are allocated.

    Incidentally, I have PAF diagnosed 2 years ago in a similar way to you and am currently AF free with drug treatment and am 71.

    Best wishes - keep posting and ask anything - someone will be able to help.

    xx

  • Thank you for sharing your story irene. All of us will be able to relate to one or more of your experiences. For me, I was diagnosed at 53, 20 years ago. I was lucky that a short course of atenolol put me into remission for years. However, that precluded any offer of ablation. Looking back I'm not sure that was so lucky. By the time af hit me again, I was given to understand that I would not be suitable for ablation. I've never been quite sure why. But my af is reasonably well controlled by drugs now. I'm pretty sure that I would have gone for ablation at a younger age, knowing what I know now. I think others here may agree. Good luck and keep in touch. JanR

  • Hi Jan - Further down I have posted details of the trial I am on - if you don't have any of the conditions listed might it be worth following up - especially if you have been told you aren't suitable but you haven't been given any details why. The worst you could get is a second opinion and more information.

  • It must have come as a nasty shock but it does seem as though you are in good hands. I think that you are in a win/win situation. If you get into one of the ablation arms then you get fast tracked to what is probably the end treatment of choice, and with an experienced EP as they will not allow the trial to be influenced by inexperience. If you get into the rhythm control arm and the drugs are ineffective then you will almost certainly be offered ablation anyway.

    The risks of ablation in experienced hands are very low and the outcomes usually good. The procedure is not as dramatic as you may be imagining, when you come out you wonder why you were so anxious. I was successfully ablated a few months ago, in one afternoon and out early the next morning.

    Good luck, I am sure that it will all for well for you.

    Peter

  • My first thoughts whilst reading your post were 1) what a first class GP, and 2) how lucky you were to be seen during an episode.

    Do not be afraid of an ablation. I would not want to be earmarked for 2 so quickly though. Have one and then wait to see how successful it has been.

    Very best wishes.

  • Discounting the fact you have AF you seem to be in a favorable position where the treatment path is fast tracked, monitored and protected. Keep researching, Ablation can seem scary, but all surgery has it's risks and they are obliged to inform of the worst scenario's. Having just had an Ablation I would have another without hesitation if I need one but like Jennydog says in your case the scheduling of a second if required does seem a somewhat close to the first. Is that second date negotiable?

    Best wishes

  • I have the research cardiologist's email address and have a list of questions to ask him, one of which covers the date of the second ablation (as I understand from this forum many people continue to get AFib for some time afterwards). I don't want to go through a second unnecessarily!

    I'll let you know the outcome, Jennydog and checkmypulse. Thank you both.

  • Irene,

    What a text book life you lead and a great Doctor you have. Wouldn't it be great if they were all like that.

    Your waiting 6 months? I had to wait 7 years to get to my ablations and be free of AF. What a relief.

    You go for all that is on offer and have the closer attention that in the AVATAR work they will be able to give. The catheter ablation is unusual but enjoy the ride. Treat it as an experience. In one day out the next. You are in good hands.

    I am very much more confident about it now that it has passed and I was thankful to be treated.

    Get well, Dave.

  • I am much cheered up by your replies. I am really ok about being on warfarin for the rest of my life (I do not want to suffer a stroke) but the Bisoprolol turned me into a zombie so I have come off that for the time being. I will let you know what happens in three weeks.

    Thank you all!

  • After the ablation(s) you may be able to go on one of the NOACs rather than warfarin.

  • I just took what the doctor offered me - not quite sure if warfarin is better or not (I do know I don't need checking if I am on a NOAC).

  • I wish my GP was this dedicated to his patients. I was diagnosed in November and still haven't even had an echo-cardiogram yet :/

  • I am still amazed at the speed of all the appointments I had. It may well be the hospital has heard from your GP but is very busy, might be worth by-passing your GP and ringing the Arrhythmia Clinic yourself to find out what the delay is.

  • Yeah you obviously have a good support network too! I am in my early twenties and at uni, so having something wrong with my heart causes a great deal of anxiety for me personally! I've actually got an echo-cardiogram booked now for Wednesday so at least there's that!

  • I am really sorry to hear that - you must be so worried and apprehensive - so glad you have a good support network around you and from my experience here (from my first post) there are lots of really caring people on this forum who respond within hours to people who need help and advice. So don't be alone at any time - keep in touch. Will be thinking of you on Wednesday - best wishes.

  • Diagnosed in December and an ablation in April. To quote Punch, "That's the way to do it".

    I'm not entirely certain from your post whether you have a say in which 'group' you are placed, so you might be in the "medication' group? That would be a real disappointment if it were me, enough for me to pull out of the trial (unless they swapped me for someone else who didn't want an ablation)

    I assume you're in the US. How long would you have to wait for an ablation in the normal run of things - or is it all about dollars?

    Here's hoping you're in the right group..... Good luck.

  • Wrong assumption. I see from your profile you're in the UK. As I said I hope you are in the ablation group but if you want an ablation you really don't have to wait too long here. Far too many people put it off but if you convey an urgent desire to an EP (not the nurse), then the ball really will start rolling.

    But let's hope you're in the ablation group and you can say goodbye to this horrible condition come the Spring.

  • Well, I have a 66% chance of being in one of the ablation groups. After another (short) episode this morning, yes I would be disappointed if I am on the medication group. I was one of those arrogant people who claimed never having to take medication of any sort and look where I am now!

  • Hi Irene, I was fit and healthy before I got my first known AF attack just as I was reaching the top of Ingleborough - thought my time had come! Anyway, spent the next five years in denial, on drug regimes, in and out of A&E and the only constant was that my AF bouts became more regular and lasted for longer periods. I had an opportunity to have an ablation just under a year after my first attack and I was just not mentally prepared for it. Had my cryoablation a year ago and the only regret was that I didn't go for it early doors. Yes, you can find all sorts of horror stories on the internet but the statistics are in your favour. Reading horror stories about traffic accidents doesn't stop you driving your car! All I can say is that this is your early opportunity, don't waste five years getting worse!

  • Couldn't agree more.......I did waste 5 years!

  • Thank you Mike, I won't!

    And for anyone else who might be reading this, the criteria for being part of the AVATAR study (an Imperial College initiative) is to have no underlying health problems. The key reasons for exclusions are pregnancy, heart failure, stroke, gastrointestinal bleeding and renal failure. If you are waiting for an ablation and think you might qualify, the study is still running. I understand various cardiac centres across the UK are participating. The information I have says your first point of contact will be your local Research Nurse who will put you in touch with the Principal Investigator at your hospital.

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