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Janiceland Find out more about Janiceland
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  • I Need Some Information

    I don't know if this is the correct category to ask this question but here goes: Does anyone know what percentage of hypertrophic cardiomyopathy people have symtoms and what percentage does not? By symtoms I am talking about the edema in the ankles, the extreme fatigue, the shortness of breath and the sharp pains in the neck and back. Also, does anyone reading this ever get sharp jabbing pain right under their left breast? The reason I am
    asking this is because I get this more that I like to think about, my sister (who passed away from HCM) had this kind of pain the night she passed away and also now my niece (16 years old) who was just diagnosed with HCM called from school to come get her because this pain was so bad for her.
    It kind of makes me wonder if this is HCM related even if the doctors do not think so.
    Janiceland

  • #2
    Re: I Need Some Information

    I, too, have sharp stabbing pain in my chest from time to time and my cardiologist said it was not heart-related. i just got back from the mayo and my predicted "five year mortality" based on a stress-exercise test was 0.8%-but that is just me. you have a sudden death in your family which means it is imperative for you and your niece to be evaluated for an ICD (implantable cardioverter defibrillator) immediately. please contact the office for referral info.

    all the other symptoms you mention are very much HCM or CHF symptoms (edema is usually CHF caused by the HCM) and I can't imagine an HCM specialist saying otherwise. I have had cardiologists unfamiliar with HCM claim that chest pain is not a symptom, but I let those know they are wrong as nicely as I can (even though I'm usually in an ER bed when this is happening since it is the only time i can't choose who i'm going to see).

    please get checked out asap by a real HCM specialist and keep us posted.

    s

    ps it is also key to stay hydrated. also, you are in MN, so you are near Dr. Barry Maron of the Minneapolis Heart Institute literally wrote the book on HCM and the Mayo has a sub-clinic devoted to HCM.
    Last edited by Sarah; 05-14-2006, 01:30 AM.

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    • #3
      Re: I Need Some Information

      I would estimate that approximately 80% of people with HCM - however some of the symptoms are very subtle thus some people do not know they are having heart symtoms. I would estimate that about 20% of people really have no HCM symptoms --- until they day they do --- I would estimate that nearly all people with HCM will one day have a symptom, some major some minor. While these numbers may not make sense I think most of you can see my point. Most of those diagnosed have symptoms - those who are not having sympotms now will highly likely have some symptom at some point in their life - that split is 80/20 from the thousands of people I have spoken with thus far.

      I hope this not so clear answer helps!

      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: I Need Some Information

        You can put me in the category that had no symptoms until age 50. It hit my uncle at an earlier age, around 40, and my father at an older age, around 65.

        Hey, here's a question - my grandfather died at around 50 in the 1950s with a blood clot. I wonder if that was from HCM - I read somewhere that atrial fibrillation can cause blood clots. I guess that qualifies as a sudden death, doesn't it? Did they even know what HCM was in the 1950s?
        First major HCM symptoms at age 50
        ICD 6/06

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        • #5
          Re: I Need Some Information

          It is highly likely that his death was HCM related.

          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)

          Comment

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