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Lisa Salberg Find out more about Lisa Salberg
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  • Are you a lurker?

    Hello to all of our "lurkers" "watchers" "read-only types" - you all know who you are!

    I am posting this message for this group under "Announcements" because I know you will not write back

    First of all - WELCOME - you need not be a "sharer" to gain from this board. I would say that based on my nearly 14 years of running the organization and I think now 7+ years of running the message board - that you gain a great deal more when you share a little bit - and ask the questions that are on YOUR mind rather then digging in hopes that someone else previously asked the question.

    In the past few weeks a large number of "lurkers" have either called the office or taken the plunge and written on the board. That is great! The journey of a million miles starts with one step....

    I found the need to write this message after speaking to a number of lukers who, with all due respect, have not been the best advocates for themselves because that lack some of the information they need to make the best choices and ask the best questions of their health care providers.

    I know it can be a bit overwhelming to gather information, to talk about your (or your loved ones) condition, and some of the information is rather frightening. The HCMA wants to make sure you all understand a few key items:
    1. ALL information you discuss with the HCMA office is CONFIDENTIAL and not shared with your family, loved ones, insurance companies, medical providers or anyone else - UNLESS you authorize us to do so.
    2.You have a right to all of your medical test results for your health care providers office and you should keep a copy in a safe place at home for use in an emergency.
    3. You should understand YOUR heart - the echo is the best way to learn about your heart. Understanding your echo report need not be overwhelming - the HCMA is here to help you.
    4. You should have open communication with your health care providers and ensure that ALL of your doctors are aware of what the others are doing... yes it matters that your GP knows what your cardiologist has recommended and ordered for you and your all subspecialist should be all in the loop on what each other is doing.
    5. You need to talk to your family about getting screened for HCM.

    The good news is the HCMA is here to help you navigate these challanging issues. Friendly and confidential assistance from the HCMA is always just a phone call away!

    Best wishes to all,
    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)

  • #2
    Re: Are you a lurker?

    Trying to find out where to sign up for todays teleconference = cannot find mention of it on 4hcm website - could not sign on from email sent to me


    • #3
      Re: Are you a lurker?

      I ment webconference


      • #4
        Re: Are you a lurker?

        See if this helps...

        If you would like to participate please email the HCMA office . Once your membership is confirmed, the link to the webinar will be sent to you. [email protected]

        Dx'ed 4/11 with "left ventricular hypertrophy"
        Re-dx'ed by a new cardiologist 4/13 at age 51 with possible HCM.
        Went to Tufts 7/13 and verified HCM with obstruction.
        Going in for a Myectomy and a Maze procedure on 11/13/13


        • #5
          Re: Are you a lurker?

          I would not be quite the lurker I am. I can't ever seem to get on the site or post something I need to. I have a post out there now and 2 messages that I cant retrieve. It must be me, but I just cant seem to get around on this website and I really need too. Whatever you think I doing or not doing, someone please let me know. Thanks


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