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carolynhaysjones Find out more about carolynhaysjones
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  • Sarah
    replied
    genes-icd

    They were hoping to link a mutation with sudden death, but they haven't been able to, as far as I know.

    As for ICD's, the criteria are a septal measurement of 3cm or more, a history of ventricular tachycardia or fainting, blood pressure that drops or doesn't go up during exercise (or a stress test), and a family history of sudden death.

    You can use the Search link at the top of the page to find many, many good posts on ICDs and also visit zaplife.org for a board (unrelated to us) for people who have ICDs for any reason, not just HCM.

    Good luck and keep us posted,

    S

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  • carolynhaysjones
    started a topic Genetic Testing

    Genetic Testing

    Does anyone know if researchers have identified genes and sites that cause sudden death? Does anyone know the criteria that is used to put in a defibrillator? I got back for my followup appointment on July 13, and my Memphis cardiologist thinks that a defibrillator should be put in.

    I'm progressing slowly, and still lack any energy on a sustained basis. There are days when I feel like I'll be like this forever, and that I had more energy the day before my myectomy.

    Other than being weak, I'm doing well, still not taking anything for pain and all medical exams in Memphis have been excellent.

    I couldn't have made it with all my HCMA friends.

    Carolyn Jones

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