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Virginia Find out more about Virginia
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  • a-fib anyone

    Hi All,

    I am new to the group but not to this disease. I was dx 4 years ago. I recently had a defibrillator implant by my cardiologist because I could not get back to Boston. I did not believe I had the disease until I seen the experts in Boston. Which is a great group of Drs..

    Well last week 5 weeks post op I went to my dr. who paced my heart. When I left his office I was fine. A few hours later, my heart beat didn't feel right. That was Wednesday. By Friday night I felt like I was going to black out and my heart was doing flip flops. Went to the ER and was informed I am in A-fib. Gee thanks.....

    They sent me home doubling my beta blocker and on coumadin. Joy Joy. More meds.

    I have many other conditions that do not help with my HCM. I am quite worried about the A-Fib since that was what my brother was in 15 years ago and ended up diing from a sudden death event. Fortunately I have a defibrillator he didn't.

    Does anyone know what I can expect from my dr.?

    Thanks
    Virginia

  • #2
    Re: a-fib anyone

    Dear Virginia

    I'm very sorry about your brother and glad you have an icd. You may want to double check on how it is set.

    As for afib, you need to be on coumadin for three weeks and possibly start taking something stronger than atenolol (like sotalol, disopyramide, or amiodarone) and then be electrically cardioverted (the external version of having your ICD fire. They sedate you for a cardioversion so you don't remember the zap.

    As for the medication, many doctors still prescribe amiodarone right away because the drug company marketed as a "front line" medication for afib. However, it was not approved by the FDA for that at all.

    You can research drugs here in the board (search function) and on-line.

    Beta-blockers are good stuff, but they aren't really strong enough to keep most people in normal rhythm once afib gets started. However, everyone is different and you should see how you feel.

    Don't forget that you need to control your vitamin K content. I've found that the booklets they hand out with foods and their K content leave out a lot of things like strawberries and oatmeal --ok in small doses but don't have too much.

    take care,

    Sarah

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    • #3
      Re: a-fib anyone

      Hey Jersey girl - give me a call later and we can talk about this. We know lots of docs in NJ and I am sure we can help you out.

      Take care,
      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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      • #4
        Re: a-fib anyone

        Hi Virginia.

        A-fib is a bite to deal with, but it is manageable. I have lived with it since 1999. It sounds like you and I have similar symptoms (not every does) in that we “get that floppy feeling” thing going on. Some people are in constant a-fib and paced. The way my heart dances around that would never work.

        I am on sotalol and for the most part my heart behaves. So far they have been able to convert me with drugs each and every time a-fib rears its ugly head. For me it is more of a nuisance than anything else. I am learning not to be quite so scared when it happens.

        Please do give Lisa a call at the HCMA office. She is so helpful. And she can give you much more info than I can. I just wanted you to know that while a-fib may feel like you have a frog in your chest, with proper care and meds you can probably manage it well.

        Peace,

        Leon
        God Squad co-moderator
        Nothing is as gentle as strength and nothing is as strong as gentleness

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        • #5
          Re: a-fib anyone

          sorry to hear about your brother, I lost my son to sudden death so I can relate. I too have atrial fib. for about 3 years, I've been treated with couminden and amiodarone whish worked well,but does have a lot of possiable side affects. I was later switched to sotolol and that seems to be working fine. I know it can be scary, I wish you the best.
          Jen

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