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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • Pacing

    Hi everyone is it true, when the heart get to the point it gets stiff and won't relax between beats, that disease is in the late stages, i was just wondering because the dr. told me that i had a mild case and my heart wasn't relaxing between beatsso they are pacing me, and i thought that it was proven that pacing really doesn't work for relaxing the heart is this true

    i really need some advise here
    Shirley
    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

  • #2
    Re: Pacing

    I'm not sure what "mild" HCM is, but I don't think that stiff muscle is end stage. I think end stage is when the heart gets worn out and inefficient from pumping so hard for so long. Hope this helps.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

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    • #3
      Re: Pacing

      Shirley,

      Reenie is right. End stage HCM is when the heart is actually beginning to thin and get floppy and big all over from getting stretched out due to years of working too hard. that is why they try to get our hearts to beat softer all the time.

      Pacing works for some, but is not a cure-all. Are you seeing an HCM specialist? If not, sounds like you should. Regardless of how specialized your doctor is, if you have concerns about your treatment you should 1. talk to them about it and 2. get a second opinion. Good doctors are never insulted by a second opinion; they welcome them.

      take care,

      s

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      • #4
        Re: Pacing

        Sarah

        i'm going to richmond va, the 30th to see Dr. Gilligan, My cardiologist isn't worth anything, that's why i was asking about pacing, he never told me he was going to pace me, he just did it. and if my heart is stiff i thought it sure wasn't the beginning stage of the disease, my origanal echo stated i had some septal thinning, if i have septal thinning well how can my heart be stiff, i'm just cofused i guess, and i have alot of questions for this dr. on the 30th. Thank you Sarah
        Shirley
        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

        Comment


        • #5
          Re: Pacing

          dear shirley

          if i were you, i would get copies of every echo you've ever had and then compare them. does the latest one mean thinner than normal or thinner than before? BIG difference there. and i'm outraged your doctor "treated" you to pacing without your permission. so fired.

          good luck, take care and keep us posted.

          s

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          • #6
            Re: Pacing

            Yes, NO and Maybe....
            In HCM the heart can get so stiff that is becomes like a restrictive cardiomyopathy - this is NOT "end stage" or "burnt out" HCM this is different - and does happen but not often.
            I would wait and speak to Dr. Gilligan - he can explain everything to you - I think the world of him.


            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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