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My son James on the way Home!

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Janet McClure Single mother to two amazing kids. James is 13 and has HCM. Emily is 11 and recovering from TBI. Find out more about Janet McClure
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  • My son James on the way Home!

    James is finally on his way back home and I can't wait to see him. He had been shocked twice last Sunday. They did go to the emergency room Tuesday night and a medtronic tech confirmed he was shocked with 14 joules and again at 30 joules. His dad was very surprised he had been shocked. He had also had several episode of nonsustained vtach since May 28th. Dr. Link, the electrophysiologist at TUFTS NEMC called yesterday and they are going ahead and doubling the Toprol XL. They also want me to take him and have him checked out as soon as he gets back and not wait until Monday. Dr. Link talked to the ER Doc in Springfield, MO and he wasn't sure from reading the strip if it was AFib or VFib. I know AFib is upper chambers and VFib is lower chambers and is the one that can kill you.

    Dr. Link also told me that when you have a fresh AICD that the shock is alot more painful. They are definitely going to have to make some modifications on his programming and medications. He said he will need to be seen every month by the Electrophysiologist for a while.

    I was very impressed how Dr. Maron and Dr. Link called me several times this week to see what was going on. They both were VERY upset that it took him so long to get to a doctor.

    Anyway, I should have him home tomorrow or early Sunday. I can't wait. Dr. Link was very concerned about James and said he would do all he could to make sure this doesn't happen again.

    Anyway, I'll keep you posted! Thanks, Janet
    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

  • #2
    I'm so glad he is on his way home and you can get it all sorted out.

    And while it is a shame his dad didn't "get it," this experience should prevent him from making the same mistake twice.

    Let us know how James is doing once he gets "reprogrammed."

    take care,

    S

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    • #3
      I'm glad he's all right and that NEMC is looking out for him. I'm hoping James's dad will take him seriously now that he knows he was telling the truth about being shocked. It's sad that he put him through 2 days of worry for nothing.

      Reenie
      Reenie

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

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      • #4
        Janet,

        I've been following the goings-on, but since I don't have an ICD I couldn't really give any advice to you. However, I'm very happy to hear that your son is on his way home now. That must be a huge relief for you. Please keep us posted on what you find out.

        Jim
        "Some days you're the dog... some days you're the hydrant."

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        • #5
          Janet,

          Glad to hear James is on his way. What a relief indeed!

          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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          • #6
            Janet

            I know you are releived he is coming home God Bless

            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
              Janet,

              So good to hear he is on his way home. Best wishes to you both!

              John
              41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005

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