Should I be pleased?

Hi everyone. I was diagnosed with PAF around Oct 2014 my episodes are never severe but they are frequent (every other day) HR very rarely over 75 with no symptoms and last anything from 5 mins to a couple of hrs. Anyway, I met my EP following my request for a referral for the first time yesterday. I was expecting a discussion surrounding drugs to control the episodes...no he immediate started to talk of an abalation, what would happen etc. All a bit of a shock.....hence my post title....should I be pleased. The procedure will be carried out at the liverpool heart and chest hospital. Thanks.

30 Replies

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  • Your reaction is your reaction, are you pleased? Sounds like you are shocked so need some time to process this information,

    Many people live with persistent or permanent AF and are symptom free. My guess would be the EP suggested go straight to ablation is that if you progress it would be to persistent, with present episodes so frequent and therefore the sooner you have the ablation the higher the likelihood would be for success. The longer you leave it then the more difficult it would be to ablate AF.

    I can only offer a personal view - I would be jumping up and down saying yes please!

    But I am me and you are you and if I may offer any advice is would be to say yes, then you are on the waiting list, then research, research, research and consider and make a decision - your decision!

  • I agree with CDreamer. My treatment started with an ablation which was not unsuccessful but revealed that I actually had AF. Drugs were introduced and worked like magic at first but I wish now that I had had a tidy up job right away. I waited three years on increasing amounts of flecainide and I regret taking so much of it.

  • An ablation is a very expensive procedure and not considered lightly. If you definitely have AF and have got as far as seeing an EP then an ablation is the most likely way forward.

    I had my ablation at LHCH. You are in good hands.

  • YES yes yes! They wouldn't offer if you didn't need it and why spend the rest of your life taking drugs when this could sort you out. As above. go for it. But take time to read and learn and thereby understand and accept.

    Bob

  • "They wouldn't offer it if you didn't need it" sounds good, and I tend to agree that it's good to stop the thing in its tracks. But consider the adage, "When you have a hammer, every problem is a nail."

  • The other one is if you go to a car salesman you buy a car.

  • I also say 'go for it'. Tackle it early before it 'gets a hold' makes sense. The longer you leave it the harder it will be to treat. There are opposing views so research, research, research. Knowledge is power.

  • Thank you for your sensible and common sense responses. I suppose it all came so quickly it took me by surprise. I have been offered a cyro ablation I also understand there different procedures all but all aim to "Cure AF" not sure which is which and does the type of ablation reflect the doctors preferences. I may add I am 68 and it would appear I have Atrial Flutter and Ab Fib I still feel anxious about the future but at the same time pleased.

  • Hi exactly the same thing happened to me and I appear to have very similar AF but now mine is every day despite meds. I too panicked but

    Said "yes " to go on list which is giving me plenty of time to research and now I actually can't wait and am on cancellation list too !

    I am 57 and really fed up of symptoms that just get worse particularly as still trying to teach my primary school class"

    Of course I am anxious but am now also thinking how amazing to live in a time when medicine has advanced so far that they can do procedures on our hearts like this.

    I say "give it go" and let's hope both our ablations are successful and we feel rejuvenated!

  • Felt pleased too RoyM but, boy, was I anxious ( never ever had a GA, for one thing). When you' re out the other side , as it were, and no AF...well, ask yourself then, was it worth it?! Ablate that problem, I'd say but don' t allow anyone to force your hand - not us, not them! All the best

  • Cheers flipflop I appreciate your reply and your good wishes. Thanks Roy

  • Can understand the mixed emotions around this for you royM, this is only a personal view but as scary as it was I would rather nip it in the bud than all the medication which can cause secondary problems, they can and do work but I would favour an ablation over long term medication, it is well known that the longer untreated it can turn into persistant af and a different outcome then for treatment (less treatable).. Just take a step back, gather all the info you can, do pros and cons list maybe? Do what's right for you and be guided by the professional's as they would not go ahead and offer an ablation if they did not think it would benefit you but likewise come to that decision on your own grounds then it will feel ok. 😊

  • Hello Roy, GA and Cryo would be my choice also, did the EP say what the expected success rate is, given that he is nipping it in the bud early, hopefully 80%+. I would agree with CDreamer, great opportunity if the rest of your health is generally good. I would also see if you can find out what the EP's record is using Cryo.

    That said I have to admit that I went myself for postponement (quoted 70% success only) and just the Flecainide drug with Lone PAF back in 2014. My plan was always if it's Lone AF (i.e. they don't know what's caused it) I have a better chance of correcting it myself as they improve their procedures. Still on the drug today but with supplements and lifestyle changes, I am feeling fine albeit running at 80% energy levels, no doubt due to the Flec reducing my pulse 5 points to 55. If reducing the drug this year doesn't work, then I will join you.

    Good Luck!

  • Hi orchard worker as far as I know it is lone af but with a flutter thrown in for good measure my episodes are mild with no symptoms at all apart from a raised HR of 75 - 80 bmp I naturally have a resting HR mid 40 ' s I was prescribed Bisoprol once a day (1.25mg) but it lowered my HR to high 30's so it was changed to a pip when needed. I am not on anticoagulants (score of 1) I am 68 and otherwise in good health. The EP considered I was a prime candidate for a cyro. It just all came so quickly and took me by surprise. Thanks for your reply. Roy

  • Don't get rushed by the medics, learn as much as you can and then as already mentioned the decision is very personal after that i.e. gut feel, not very scientific I know.

    Also there is no right or wrong as there is no parallel universe where we can see what would have happened if we had chosen the alternative route.

    Have a great day.

  • Hello Roy,

    I was diagnosed with Paroxysmal AF in 1999.

    Taking it once a year,every other year or every two years.Then it changed out of the blue,to once a month

    Every month for 6 months.This is when the Cardiologist decided to try the "Pill in Pocket" it was

    prescribed for me 4yrs ago and have not looked back.

    I have to take 300mg of Flecainide all at once,ONLY

    WHEN AN EPISODE comes on,40mins to 2hrs my heart

    is back to normal.

    Next month it will be a year since my last episode let's

    Hope it continues,touch wood!!! I have never had any procedures done in 17yrs,I am very fortunate.

    Good luck to you,hope you make the right decision for

    You.Keep well,let me know how you go.

    Eleanor.

  • Here in the US, the most insurance plans will not pay for an ablation until at two least rate or rhythm control drugs have failed to yield results.

  • The difficulty with that system is that it then becomes a financial decision by a third party rather than a clinical one in which the decision is based solely on need - especially if you cannot afford insurance - or a personal choice. A similar rule used to apply with NHS NICE guidelines but techniques have moved on so much that no longer applies, so I believe.

  • Just this morning, I got my letter from Liverpool with the date for my cryo ablation (2nd March).

    I am in a similar sort of situation. I was diagnosed with PAF in October. My GP put me on beta blockers and warfarin straight away. An echocardiogram showed no major structural issues with my heart (apart from an enlarged aorta artery). Unfortunately, I feel every errant AF beat and find it very disturbing, as it comes and goes during each day, especially at night, and it has got worse since diagnosis. HR goes up to 90 - 120.

    I did some research myself (thanks Google) and came to the conclusion that I would rather have an ablation than be on drugs, with their uncertainty and potential side effects. At 53, I could be on the drugs for many years and am otherwise in reasonable health. My initial cardiologist wanted to adopt a wait and see approach, but I booked a private appointment with an EP (Derek Todd) who agreed an ablation would be right for me and would do one on the NHS at Liverpool. He said it should be around March, so I am pleased (but also a bit scared) that it has come through so promptly!

    Since then, I have seen my original cardiologist who suggested an ablation before I had a chance to tell her about seeing the man from Liverpool, so I take that as a good second opinion that it is a good course of action.

    You have to take your own circumstances into account, such as your age, general health, and how much AF affects you. I know the logical choice is to have an ablation, but I can't help feeling a bit nervous about it. So I am totally with you on that!

  • Thanks alan...see you there lol

  • I was also very nervous and nearly backed out the day before, that is natural as you are going into the unknown - may I suggest you read previous posts on other people's experiences after having ablation - the great majority say that it was much, much easier than anticipated.

    Some really good advice in above responses so I hope you feel you have been able to process some of your mixed feelings and know you are not alone!

    Best wishes CD

  • Thanks. I know and I promise to try to be brave!

    People have mentioned a list of things to take - do you know where that is please? I have bought a light cotton dressing gown already.

  • I doubt you will ever get the chance to wear it! The 1st few hours you will have to lie supine and you will not be able to move your legs - this is to ensure that your wound will not bleed. You will not be getting up to go anywhere.

    The ward I awoke up in was ITU where I stayed overnight, then shipped back to room, then discharged by lunchtime - the ablation was the previous afternoon. Because they move you about somewhat take absolute minimum that will fit in a very small bag so it will travel with you - small change for papers maybe - towel & toiletries and that is all you will need. Slippers, book or magazine - there may a lot of waiting around pre-procedure so something to occupy yourself - I take my iPhone and have audiobooks on it & music so plugged in my earphones & I find that it helped distract me & sleep - whatever works for you.

    Then after they are sure there is no bleeding you go home. Usual toiletries if it is an overnight stay - most but not all are - I think I remember people saying lip salve - I would add throat lozenges - expect a sore throat - some people also have acid reflux so stock up on food that is easily digested & liquid Gaviscon worked for me.

    It is not considered a major procedure - although it will feel like it to you!

    You will not be able to drive for at least 7 days and you will need to do absolutely nothing for the first week and little else the 2nd - do as I say & not as I did - felt so great that the second day home I blitzed the house - undid a lot of the work of the ablation and ended up needing a second.

    I went back to work the third week - but I was in charge of my own destiny so didn't do more than essentials and I had a sedentary job. Doing too much, too soon will cause problems so just ease yourself very gently back into everyday life.

    I bought comfortable 'leisure wear' and wore it a lot for the next few months.

  • Thanks very much - very helpful, though I'll be disappointed if I don't get to wear my new dressing gown!

    I really need to think about the following couple of weeks as I live alone and am not sure if I will be able to do basic things like simple cooking. I'm sure a few days will be OK, I can get a few microwave meals in, but after that it might be a struggle.

    I've got a neighbour who I can give a key to and maybe ask a friend to come over, but I know from other posters you don't necessarily want the hassle of people coming around, depending how you feel.

    Do you think it would be useful to get pay an agency to send a carer round for, say, an hour a day for a fortnight? Or is that over-kill?

  • Over-kill in my experience. I felt perfectly OK and had to remind myself not to do too much. Have a number handy in case you feel you need to send for someone, but I think you will be fine. You can manage! What's wrong with paper plates? There is no need to dust or vacuum for a week. The kitchen floor can go without a clean too. Just buzz around a bit beforehand. You should not lift anything heavy afterwards. I was allowed to drive after 48 hours.

    A pair of slippers you can wear in bed is handy as you may walk along for the procedure. Have a bag that has room to take all that you have with you plus all the clothes and shoes you are wearing when you arrive.

  • You can make meals up beforehand and put in fridge or freezer. You can also get salads and veg all prepared. You should not be having microwave meals as most of them contain processed foods, high in salt, high in sugars, etc, etc which are things that should be avoided by most AF sufferers. As my EP stole me they may not be triggers but are AF stimulators, though some can get away with it.

  • Rellim is right - the difficulty is remembering to take it easy! The hospital will advice you and ensure you can walk up & downstairs before they release you.

    You won't need a carer but may be a 'go to person' in case of emergency so having a number of a neighbour etc......

    This really is not an big operation, some people have a GA but most ablations are done under sedation.

  • Thanks for the replies. It's difficult to know how much it will affect me, and I guess people react differently too. Good advice re having some home made veggie soups in the freezer, and having a friend/neighbour on stand by.

    For hospital, small bag with dressing gown (which I determined to wear), spare underwear, lip salve, moisturising cream, healthy snacks, water bottle, phone, iPod, tissues and small amount of money.

  • Sorry Alan not even thought that far ahead. ...but if you find the list I would be grateful for the details. ..good luck for March cheers Roy

  • Thanks CD I continue to marvel and appreciate the knowledge on here but more importantly the empathy and can passion shown to people who are struggling somewhat with difficult decisions and some anxiety. I would like to say a great big thank you to all those that have taken time out to read my post and even more taken the time to reply. Thank you. Roy

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