If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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Lisa Salberg Find out more about Lisa Salberg
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  • How are we doing?

    Statistic of the message board:

    Number of posts: 12559 Posts per day: 22.85
    Number of topics: 2765 Topics per day: 5.03
    Number of users: 690 New Users per day: 1.26
    Board started: January 9, 2003

    I just thought you would want to see the volume of posts and how often new participant are joining our community!

    Be well,
    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)

  • #2
    Re: How are we doing?

    Lisa,
    The growth has been phenominal. I know when i first started visiting this site it was a Godsend. I learned more about hcm in a few weeks of visits than i had for years from my doctors. I thought i was alone with this disease but it was quickly apparent that many were in the same situation as myself. As a result of your efforts with the HCM society and the web site, I have seen a specialist (Dr. Lever) and feel much more comfortable with my treatment and the disease in general. If I have questions, it is wonderful to know that I can post here and get informed comments/answers and also have a chance to share some of my experiences. I recently saw Dr. Lever and was describing some of the side effects of my drugs (amiodarone, coreg): lethargy, mental dullness, forgetfulness, etc. and I said that I was striving to get back some zip, enthusiasm, energy and I used you as an example and he said that "well you know, she is an exceptional person, I don't know how she does it.
    I don't know either but please keep it up!!!
    Thanks.
    chuck
    Chuck B

    An inch is a cinch, a yard is hard

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    • #3
      Re: How are we doing?

      Chuck that was sweet. The success of the HCMA is a team effort - it takes the patients, the doctors and the families to make this work!

      Best wishes,
      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)

      Comment


      • #4
        Re: How are we doing?

        Lisa credit goes to all but let's face it you being always present and invested daily really makes this this board the big success that it continues to become . You rally everyone around and never stop giving . Your inspiring ways inspire others to get on board. So Chuck is right. Pam
        Dx @ 47 with HOCM & HF:11/00
        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
        Lead failure,replaced 12/06.
        SF lead recall:07,extracted leads and new device 2012
        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
        Genetic mutation 4/09, mother(d), brother, son, gene+
        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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        • #5
          Re: How are we doing?

          Just as an update:

          In 12 days we have had 15 new users register on the message boards!!!
          Life is 10% what happens to you and 90% what you do with what happens to you.

          Comment


          • #6
            Re: How are we doing?

            To the entire crew at the HCMA foundation

            YOU HAVE DONE A GREAT!!!!!!! JOB

            I KNOW I HAVE LEARNED ALOT IN THIS PAST YEAR

            SHIRLEY
            Diagnosed 2003
            Myectomy 2-23-2004
            Husband: Ken
            Son: John diagnosed 2004
            Daughter: Janet (free of HCM)

            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

            Comment


            • #7
              Re: How are we doing?

              Ok folks, it is that time of year were I have BUG you all about the upcoming Golf Outing.

              If we want the message board and other HCMA services to continue to be available and grow, we have to provide the financial support to make that happen.

              The golf outing is one of our key fund raisers. June 7th will be here before we know it.

              If you have been helped by the message board, phone calls to the HCMA, medical referals from the HCMA, etc., then please now help the HCMA by supporting the golf outing. Any level of support will be welcomed.

              Prize donations, sponsors, golfers, volunteers, whatever you can do to help make it a success.

              Thanks,
              Lynn Perry

              Comment

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