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2 year check up

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connie Find out more about connie
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  • 2 year check up

    Hi All,

    I went for my 2 year check up @ MUSC in Charleston S.C. Fri. 01/28/05.
    Dr. Christopher Neilsen did my ablation.
    I continue to do very well with the exception of the PVC's and once in a while Black spells.
    My resting gradient was less than 10 and my "At Work" gradient (via val-salva) was less than 35.
    I am scheduled to see my reg cardiologist in Bham Ala in march and will at that time discuss, yet again, the "E.P." study. Dr Cauthan and Dr. Neilsen want very much for me to have an E.P. study done, because of the P.V.C's, Black spells, orig septal thickness, and family history of sudden death.
    I am still studying this.
    I am so glad there are so many doing so well after the ablations.
    Connie
    The BEST is yet to come !!

  • #2
    I'm glad you're still doing so well. Just remember that the EP study to help determine risk for sudden death is virtually useless in an HCM heart. Best of luck!

    Reenie
    Reenie

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

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    • #3
      My doctor went by my physical apearance and family history, I was also told that an EP study would be useless

      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

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      • #4
        Connie,

        Glad to hear you are doing well.

        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
          Thanks

          I have heard the same thing from several people and it is the reason I am so hesitant in participating in one of those test. Thanks so much for your kind responses.

          Connie
          The BEST is yet to come !!

          Comment


          • #6
            The question should be is - What would they do with the findings of the EP study? Based on your family history and your arrhythmia's you may well be a candidate for an ICD.
            A positive EP or a neg. EP in HCM has no predictive value.

            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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            • #7
              Good Question!!

              Ya know Lisa I'm gonna ask Dr, Cauthan just that!! I'm tired of Professionals telling to do or not to do something w/o explaining AT LENGTH to me why.
              I just don't feel good about that E/P study and have never thought it would be useful.
              I think the information everyone has on me should be enough to decide if I need and ICD or not!!
              I know there are a lot of people with ICD's, you included, and they are a REAL LIFE SAVER, but at this point I just don't want one.
              I guess I'm to the point of being foolish. But I'm just plain tired of dealing with HOCM. I want my life back from it. Does every body feel that way from time to time. You know..........."I'LL deal with it tomorrow"...thinking?
              Thanks for your question Lisa!!! I'm glad we have you!!

              Connie
              The BEST is yet to come !!

              Comment


              • #8
                Hi Connie

                I can remember when I was approached to have an ICD implanted. I was in the hospital and had my second myectomy. I felt like..."Let me along! I can't handle all this at one time!". It actually took me one week to decide to give them the ok.

                At times now, I still feel like saying, "Hey wait a minute! I need time to grasp everything you're telling me!!"

                I bet there are other people that feel the same way. Having this heart disease and not know what's next is very depressing at times.

                Hang in there. There really are days with sunshine.
                Esther

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