Wish I had found this site earlier

I have had PAF for over 15 years. When I am not in AF I feel well and have hoped, over the years, that it would go away - in denial you might say - a lonely position as you don't talk about it to anyone. So, it has been wonderful to read posts from people with the same condition. Why isn't the AFA given more publicity in arrhythmia departments in hospital? Why don't the nurses or EPs tell us about it?

Is there a support group in South East London? Does anyone have experience of ablations performed at King's as opposed to the other London hospitals?

9 Replies

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  • Hi Hilarie - and welcome. I'm a newbie too. I only found this forum courtesy of a suggestion from a counsellor that such a forum would exist, and Google. Seems most folks here are northern hemisphere-based. I'm in Australia and keen to meet other AFIBBers and this forum provides a virtual meeting. My mood goes up and down according to whether I am in AF or not. I'm happy now, though my old companion (AF) can come a-calling out of the blue at any time.

  • Looks like you won't be able to join a support group over here but perhaps there may be one in Australia near you? AF is so weird - you never know when it is going to attack particularly if you cut out the booze, caffeine, stress etc which I have tried to do with zero effect! We must just really enjoy the good days as much as we can and live in the moment.

  • AF Association works hard to raise awareness of the condition and campaigns for better treatment at governmental levels. The Association has branches in US, Australia , and other European countries as well as contacts in China etc. At a local level I take posters into local medical centres each Arrhythmia Awareness Week in June and work to increase awareness all the time. You may wish to try this in your area?

    Bob

  • Thanks Bob. Do you distribute the posters in hospitals? I am very happy to take a poster into my GP's surgery and ask them to display it. Do you know if there are any support groups in South East London or the London area generally or should one join the Surrey group?

  • Dear Hilarie

    You may wish to contact Daisy Harris on 01789 867528 or by email: daisy@heartrhythmalliance.org. Daisy looks after all of the support groups and will be able to provide you with further information.

    Kind regards

    Vicki

  • Essex Heartbeat based in Chelmsford/Basildon area is one I know of maybe not related to AF-A.

    Contact office for any supplies you may need.

    Bob

  • Thanks Bob. On a completely different matter I think I read a post by you saying you always chose GA for your ablations. I would welcome your comments on this, as well as comments by others (although there have been quite a few views expressed already on this topic). I have decided (with great trepidation ) to go ahead with a second ablation which has now been listed for 12 March 2015. I have written to my EP to request a meeting to discuss GA as opposed to sedation and also RF (? - burning) ablation vs cryoballoon ablation.

    Thanks so much to everyone who responded to my first post questioning whether or not I should have a second ablation. It is so great to know one is not alone in the machiavellian, unpredictable, infuriating world which is AF!

    Hilarie

  • Hi Hillarie. In my case I had no choice as my EP always used GA and glad I was. There is an argument that recovery takes longer with GA than sedation and I am sure that the 20 or so hours of GA I have had over the last ten years may well be one reason why I have had several months of bad memory in that time. (three ablations plus prostatectomy plus hernia etc ). Personally I don't do lying about very well and the four hours of being flat after each one was always a trial for me.

    There is a further complication in that different methods need different approaches. For example due to the way it is done and the need for absolute stillness by the patient, laser balloon ablation is ALWAYS done under GA. Regarding the best method that is another bag of worms. If your AF is purely paroxysmal then Cryo-ablation of the areas around the four pulmonary veins may well be the best approach BUT if there are other areas which require attention then RF may be needed. You can discuss this with your EP but again he may only do RF. It depends on the equipment your EP centre has available. Since you have had one ablation already then either the ring of burns around each of the PVs was incomplete or you have other areas firing off. Re-doing the PVs with cryo could be the answer but it may not be if you have those other naughty places.

    Hope that helps .

    Bob

  • Thanks very much for your extremely helpful info - makes it easier for me to have a more informed discussion with the EP! What a minefield the whole thing is...

    Hilarie

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