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Bill Find out more about Bill
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  • Ask the Doc

    After 30+ years of mysterious symptoms, I was diagnosed with HCM in February -- at age 56. The cardiologist who diagnosed me does not appear to be an HCM expert, although I'm deeply grateful to him for his diagnosis after so many doctors couldn't. Here's what he told me: You have HCM; your mitral valve is hitting your septum; don't get dehydrated; stop taking Inderal and start taking Atenolol; come back and see me in six months.

    Here's my question: My second appointment is coming up in a few weeks and I need to know what to ask him. I would think "Am I obstructed?" "What's my gradient?" and "do I need a stress test?" But what else should I ask?

    Bill

  • #2
    Re: Ask the Doc

    I would ask for a referral to HCM specialty clinic like Mayo or Cleveland.
    If the symptoms are significant, specialty clinics are the best places to decide and do any interventional procedure.
    If the symptoms are not significant, these clinics again are the best places to provide a management plan.
    If you read the messages on the board, it is clear that at least A visit to specialty center is a life changing experience for HCM patients.
    Good luck.
    Ketan Thanki

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    • #3
      Re: Ask the Doc

      Bill, those are great questions to start with.

      Reenie
      Reenie

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

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      • #4
        Re: Ask the Doc

        Bill -
        Yes those are good questions to start with. I would also ask for a copy of your echo report. At your age and with a life of misdiagnoisis I would specificly ask about your Left Atrial measurement - if it is very large (which may be the case based on age and MV condition), this is something you want to watch - it may lead to Atrial fib. if the atria gets too big.

        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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