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Lisa out of office while at NASPE

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Lisa Salberg Find out more about Lisa Salberg
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  • Lisa out of office while at NASPE

    Hello everyone!
    Just a fast update to you all. I will be out of town at the NASPE meeting in Washington DC from 5/14-5/17. I am not sure how often I will be able to get on the board to check in...but will do my best to be here at least one time per day.
    There will be help in the office to assist with your calls and get messages to me if anyone needs something ASAP.
    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: Lisa out of office while at NASPE

    Hello - I am back from NASPE!
    While there was not a great deal of new information shared at NASPE about HCM in general there were some interesting changes in attitudes!
    It is now very clear that amoung the EP's it is agreed that EP testing has little to no value in HCM. This is a welcomed change of attitude as many docs had thought that ICD's were only needed in the event of a "positive EP test"..now it is clear that EP tests are not clear in HCM and a positive or negative test has little if any value.
    Further I spent a great deal of time with some other organizations with similar objectives to the HCMA - - we are looking into some joint efforts that will help us all! When I know more I will share that with you.
    We had many visitors to the booth that were happy to see us and share with us there stories about how the HCMA helped there patients!
    As you can well imagine Linda Price and I had a very long 3 days in Washington and I know I speak for both of us when I say...there is no place like home!
    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)

    Comment


    • #3
      Re: Lisa out of office while at NASPE

      Lisa -

      Is there any sort of an abstract or published synopsis of this assertion from the NASPE meeting?

      I might like to send it to my original cardiologist whose EP partner was recommending an EP study for me (which thanks to you, I declined).

      This is yet another example of where the HCMA set me on the right path!

      Thanks again!
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

      Comment


      • #4
        Re: Lisa out of office while at NASPE

        The EP issue was one of conversation in the HCMA booth - not a presentation. While I am sure there are still docs that will want to go ahead with an EP test - the overwhelming majority agree it has no purpose in the average HCM patient.
        Did you see Dr. Cannom yet?

        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


        • #5
          Re: Lisa out of office while at NASPE

          I am going this afternoon. It is still only 11 a.m. over here on the west coast. First, I have to take my son Jesse to a toddler class!

          I did type out a list of symptoms and dates and medications I was on to try to help figure out what we should do. I will report back tonight.
          Daughter of Father with HCM
          Diagnosed with HCM 1999.
          Full term pregnancy - Son born 11/01
          ICD implanted 2/03; generator replaced 2/2005 and 2/2012
          Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

          Comment

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