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JanetL Find out more about JanetL
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  • #16
    Re: Confused

    I'm so sorry Janet, I got you confused with the other girls that are scheduled for surgery week after next. My bad and I apologize. However, I do believe in one thing at a time. Your specialist will do alot of explaining of what everything means. If you go onto the CCF website (www.ccf.org) or the Mayo Clinic website and look up information on various diseases, if you pull up HCM, at the bottom of the page will be a list of how you can prepare for you appt and what information you should be able to provide (what they want to know) and there is a list of questions that are appropriate for someone in your situation. I wish I knew about this when I first went to Cleveland.
    Linda
    Onward and Upward !

    Diagnosed 4/07 HCM with fixed & dynamic obstruction
    Myectomy with resected cordonae tendonae 4/08 CCF
    ICD 10/08

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    • #17
      Re: Confused

      Thanks So MUCH

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      • #18
        Re: Confused

        Hello Janet L,

        Will you be seeing Dr. Bonow or one of his associates at Northwestern? My mom and I love Dr. Bonow and still go there even after having our myectomies there. We are lucky to have a Center of Excellence in Illinois. Let us know how your appointment goes.

        Be well,

        Janet B
        Believe in the goodness of mankind.

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        • #19
          Re: Confused

          LindaSo...maybe it's the nurse connection that made you think JanetL was one of us who's surgeries are around the corner. Seems to be quite a few in the medical field here.
          .....~Lisa J~......
          Married to Michael since 1995
          Four boys..18, 14, 5, & 3
          (Youngest is gene positive)
          Diagnosed in 2003 with HCM
          Obstructive HCM in 2009
          Septal myectomy Jan 24, 2012

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          • #20
            Re: Confused

            I am seeing Dr. James Flaherty at Northwestern. Thanks for the well-wishes....I have always had faith in Northwestern!

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            • #21
              Re: Confused

              Heart surgery was my biggest fear and I really didn't want to have a myectomy. I had pre-syncope and SOB all the time. I couldn't walk a flight of stairs without gasping for air and I slept all the time.

              Last night was badminton night for me. I played hard for two hours and won every match. I'm so sore today and it feels great.

              If I could go back in time and talk to myself I'd say it's not something to be afraid of. They wouldn't do these surgeries if they didn't help most patients. Sure there's some pain, but there are meds for that and a lot of other surgeries are more painful. Hang in there, you might end up being a lucky myectomy recipient.
              HOCM diagnosed Oct 2008
              ICD Dec 2008.
              Myectomy May 4, 2009
              SCD -- Father 52, Grandfather 48, GGF -- late 30s.
              Please don't tell me you're praying for me.

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              • #22
                Re: Confused

                Thanks so Much.....the waiting and not knowing is what is keeping me anxious for sure!

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                • #23
                  Re: Confused

                  Janet - Please use the search feature (top red bar) and look up myectomy, report, or story (you'll have to be creative here). You'll find MANY stories of folks, how they cope, their exam & testing, the surgery, and the recovery.
                  Some are inspiring, some may scare you - But you'll get a good idea of what to expect. Please keep in mind that everyone's experience is different. I found this VERY useful before my visit and surgery at Mayo.

                  As Lisa says - Knowledge is power!
                  Marc
                  Diagnosed @ 48
                  Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                  Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                  AICD - Valentines Day '08, Spark Plug replaced 11/14
                  After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                  Quietly going insane . . .

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                  • #24
                    Re: Confused

                    Janet - Do you have an ICD? I also had a very low tolerance for beta blockers until I got an ICD and pacemaker. Once I was paced, I was able to maintain my BP at normal levels and feel ok with a much higher dose of medication.
                    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.

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                    • #25
                      Re: Confused

                      I do not have any devices at this time.

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