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HOCM diagnosis recently


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  • HOCM diagnosis recently

    42 year old male and just got diagnosed 3 weeks ago. Currently wearing monitor and have appointments this Wednesday with my cardiologist to see next steps. I do remember him telling me something about 40 mm and very tight obstruction. Glad to have a support network

  • #2
    Welcome Goes...
    The most important part of managing your newly discovered condition is to read up on what HCM actually is and what the risk factors , possible treatments etc.are in a reliable source.There is a book for sale on this website and on Amazon by Dr. Barry Maron an expert in the field and Lisa Salberg the founder of the HCMA. Which is short and easy to digest. HCM is fickle, manifests differently in different persons AND it is not a disease your local cardiologist may be used to managing....This is why we encourage people to learn about their HCM so they can advocate for themselves and we encourage people to get an evaluation at an HCM center of excellence......You can access the list of COEs from the HCMA home page.
    There is also an HCMA Facebook group for support which is much more active than this forum. Other resources are an App called HCM Care which answers a lot of questions and was designed by reliable Cardiologists.
    Take a deep breath ..... this condition is very manageable and a good HCM cardiologist can tell you exactly how to monitor your kids.
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani


    • #3
      I sent a join request on the FB page. I'll check the list of cardiologist and see if my Dr is on it.