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hcm-like heart function but no hcm

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  • hcm-like heart function but no hcm

    Has anyone ever heard of a person's heart beating so forcefully that the walls nearly touch in the absence of hypertrophy? My daughter was born with HCM nearly two years ago. As a result, everyone in my family got screened, and my sister was told she also had HCM. (I do not, oddly enough.) She sought a second opinion and upon more thorough testing was told yesterday that her heart walls and septum are of normal thickness but that her heart beats so forcefully that the walls nearly touch. She had an EKG, regular echo, stress echo and is now on a two week holter monitor. She's been having some pretty severe dizziness and tunnel vision at times. We had an uncle who had HCM and died suddenly about three years ago at the age of 46. (My sister is 34.) Other than that, all other family members have had normal echos -- and lots have been tested since my daughter was born.

    Has anyone ever encountered this? Any suggestions on anything else we should be doing?

    Thanks!

    Lisa

  • #2
    Re: hcm-like heart function but no hcm

    Lisa, I don't know the answer but I'm sure someone here will put in their thoughts for you. I just wanted to relay my own experience. I don't have HCM. I'm here because my husband does. I do, however, have arrhythmia issues. I have had palpitations before that are so forceful that you can watch my shirt move with each beat. I always feel lightheaded and generally crappy when that happens. In fact, I even hate to be around loud music that has a lot of bass in it because it makes me feel the same way, with my chest vibrating like that. Thankfully I don't have my heart pound like that very often any more. I haven't ever been told that my walls almost touch, but I can imagine how bad I feel wouldn't be near what she feels. I'm sorry for her. I hope that she gets some help.

    Reenie
    Reenie

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

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    • #3
      Re: hcm-like heart function but no hcm

      Yes. Because HCM is genetic, it is possble --however, rare-- to have symptoms but not much hypertrophy. I would say that you all need to be seeing specialists and that it is an imperative for HCMers in your situation since this type of thing is atypical. Also, the sudden death in the family makes it more important to be evaluated carefully and check out the need for ICDs.

      Please call the office at 973-983-7429 to talk to LIsa about doctors and your daughter's case.

      S

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      • #4
        Re: hcm-like heart function but no hcm

        Lisa,
        Sarah is right, there are some cases that are very hard to pick up because there is a lack of hypertrophy *THIS IS VERY RARE*, but we have seen this happen. I would like to talk to you more about this as your family may hold the answers to some very tricky questions about HCM.
        Please call me or PM me back.
        Thank you,
        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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