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Thank you HCMA For Saving my Son's Life


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juliuskay Diagnosed 98 Find out more about juliuskay
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  • #16
    Re: Thank you HCMA For Saving my Son's Life

    Kay - I'm so glad your son had the ICD - hope the Mayo trip goes well - watching for updates - Linda


    • #17
      Re: Thank you HCMA For Saving my Son's Life

      Glad to hear that his ICD & the HCMA did their jobs!
      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 . . .


      • #18
        Re: Thank you HCMA For Saving my Son's Life

        Kay, thanks for sharing. So grateful he had an ICD and that the HCMA is a part of our lives!Sharing joy with you and your family and thanking our Creator for His provisions.
        Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.


        • #19
          Re: Thank you HCMA For Saving my Son's Life

          Thank G-d! Our community has lost so many; it is a joy to hear of one saved!
          Diagnosed at age 53 in April 2010 (after having been
          "cleared" several times)
          Into running & cycling - cleared to continue at mild to
          moderate level
          Extensive family history
          Lost my mom, aunt and nephew to SCD
          St. Judes "Fortify VR" ICD implanted 8/30/2010 "Ces't Watt"


          • #20
            Re: Thank you HCMA For Saving my Son's Life

            Last week we took both of our sons to the Mayo CLinic after Brandon's cardiac arrest event at school. Basically with Brandon they said "it's just something that happens". There was no change in his heart since our last visit with them in March. They've restricted him from PE for 3 months and then said to add a little in from there. Dr. Ackermann said there was no proof that running in gym had anything to do with the attack since he had stopped and was walking to the bathroom when everything occurred. One thing that I want to share with you that may help somebody else, they had his defib set not to shock unless it reached 240 BPM. Because of this, it took 3 minutes before his defib shocked and did its job. Very close to not making it in time.... too close for my likings. But, the reason they had it set so high was because he never had any symptoms or any signs whatsoever to indicate anything like this would happen and when he was first implanted he was being shocked unnecessarily because his heartrate would normally reach 220 bpm. They have now adjusted it lower.

            My other son Tyler (14) was also checked again while we were there. Since the muscle in his heart had grown 3mm since March and since the episode with his brother, they implanted a defib in him too. Even though his thickness is still within "normal range". Thank God! I have been sleeping much better since the implant.

            Thanks to all of you for your thoughts and prayers.
            Kay Julius
            Diagnosed '98
            Defib 02 in St. Louis
            Myectomy 03 at Mayo in Rochester
            One son diagnosed at age 3 in 2002 Defib implanted 2004
            Other son diagnosed at age 14 in 2010 defib implanted 2010
            5 out of 7 siblings positive for HCM with Defibs, 3 neices diagnosed with defibs, 1 nephew (died suddenly at age 10), 1 great-nephew diagnosed at age 1 month
            Brother age 50 transplant in 09 at Barnes in St. Louis


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