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how many times can keep getting shocked out of AF?

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  • how many times can keep getting shocked out of AF?

    I have been diagnosed HCM for 23 years. I have now persistent AF that requires me to be shocked out to return to sinus rhythm. It is now becoming a weekly affair. I have an ICD. I have "officially" failed drug therapy after years of effort - even developed lung toxicity to Amiodarone. I do not tolerate AF at all, 72 hours and I am unable to walk. Now the proposal is a MAZE, but I live in South Africa and it is not readily available here. (our best and brightest have emmigrated). I have had 20+ cardioversions in the last year. Can I keep doing this? Isn't that stiff old muscle I use for a heart going to give out with all that abuse? Is there any research on the topic anyone can point me to? [email protected]

  • #2
    If MAZE is your option now I would suggest you seek out the help of the Cleeland Clinic... they have done several members and all are feeling better at this time. This is new and it is risky, but improved quaity of life is what we strive for and this may well be your option.

    I will be out of the office until 4/3/03 at a conference, either contact me then or simply go to the links page and get the # of the Cleveland Clinic.

    Best wishes,
    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

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    • #3
      other options

      Hi,

      If you can get to London (assuming the US is too far), they have some great people there, too. And Italy has a couple of afib specialists but I don't know what kind of procedures they are doing. I'm at this conference, too, this weekend, but let me know if you want contact info.

      I'm in afib too and I was offered "ablate and pace" where they ablate your AV-node and install a pacemaker (in your case a dual ICD-pacemaker) that would keep you going. This is less risky than a Maze and something to investigate.

      If you get to a top center, they can evaluate you for the best option.

      I was in SA two years ago for a holiday--amazing and sad all at the same time. Where do you live?

      S

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      • #4
        You sound similar to my husband. Roy is a chronic afibber & has been since 1998. He tried many meds to help keep him in normal sinus rhythm, but nothing worked. In 2000, he had an av node ablation & is 100% paced, but the a fib remains his underlying rhythm.

        Many people go about life with a fib & it's just a hassle for them. Others, like you and my husband, find the rhythm debilitating and exhausting. Did the drs mention an av node ablation to you or just the maze?

        I wish you well.

        Karen

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        • #5
          Hello everyone,

          My 71 year old father also has this problem, and has had about 10 cardioversions in the last couple of years. His Drs. are also considering an AV node ablation, but the last thing I heard was that if the a-fib originates in the right????(I think) atria, then the ablation might not work? Does anyone know anything about this? My poor dad is miserable, and can't tolerate A-fib. Everything else has failed.
          Daughter of Father with HCM
          Diagnosed with HCM 1999.
          Full term pregnancy - Son born 11/01
          ICD implanted 2/03; generator replaced 2/2005 and 2/2012
          Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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          • #6
            If the AV node is ablated, a pacemaker will be needed, because the conduction from the atria is interrupted at the level of the AV node. If the AFib is causing the heart to beat too fast, the ablation will stop that fast and irregular beat from getting thru to the ventricles. The pacemaker will have the ventricles beating at a regular and appropriate rate and hopefully, the person will feel better. Talk to your doctor and see if this is what his plan was. Ask questions till you are satisfied with the info you have. Lisa will be able to give you more info in a personal call, but I hesitate to give more of a lecture on things that may not even apply to your Dad. Hope this helps, Linda

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