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My Poor Prognosis Is a Secret

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armstrong Find out more about armstrong
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  • My Poor Prognosis Is a Secret

    Hi All,

    I guess I'm one of the lucky few here to progress to end-stage HCM (or HCM-LVSD, as my doctor calls it).

    My HCM has deteriorated over the past four years, as my refractory atrial fibrillation has required multiple electro-cardioversions and two cardiac catheter ablations. My doctor has referred me to advanced heart disease for transplant evaluation. The cardiology team -- which has been following me for about 15 years -- is listed on this website's HCM Centers of Excellence, so I'm fairly confident in their knowledge of my condition.

    I'm loathe to disclose my worsened prognosis to anyone, as I'm truly lousy at being a sick patient. I'm a relatively athletic-looking, youthful 41-year old man; so I'm incognito (so long as I'm not doing anything vigorous). I can even fake my way through a recreational tennis match, if I simply pretend to be lazy (instead of disabled). Yet I feel like a decrepit person inside.

    I'm going through quite an emotional roller-coaster, and I'm unsure how long I can or should keep my health status private.

    Just here for support, and welcome any thoughts and advice.

    Regards,
    A
    Diagnosed at age 14 with HCM; ICD Implant at age 24 (first shock less than one year later); Take Verapamil (360mg/daily) and Toprol (50mg/daily)

  • #2
    Hi, these message boards are in the process of being archived. You can join our private facebook group for support at https://www.facebook.com/groups/830709766982009 and/or call the HCMA office for guidance.

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