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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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  • Question about AICD

    If you notice, I put a picture on of my son and I. I know I am prejudice but I think he is quite handsome!!!! Just wandering if anyone knew the approximate percentage of the people with HCM that have AICDs. Dr. Link said that they do not put them in many kids at all. About how many adults have them? They are going to put a medtronic device in James because it has the smallest leads.

    We did get to do a tour on the trolley today and learn alot of history about Boston. It is amazing how much history there is here. James has been pretty tired today and has had an ear ache from the flight here. We will just be chillin around here until Tuesday. I did get to try the chowda and it is qutie good! We want to go to a seafood restaurant but there is so many I don't know which one to try! Any suggestions? Thanks for the info. 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
    Very nice picture! I'm glad you're enjoying your time there as best you can. Have a good Sunday.

    Reenie
    Reenie

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

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    • #3
      We did get to do a tour on the trolley today and learn alot of history about Boston.
      Weather was awful today -Duck boats would have been miserable.

      We want to go to a seafood restaurant but there is so many I don't know which one to try! Any suggestions? Thanks for the info. Janet
      I am guessing that James doesn’t want to put on a coat and tie and you’d like to keep an informal atmosphere.
      Used to be The No Name restaurant on fish pier would fit the bill. My wife and I just ate there after attending the Home Show in Boston. I was very disappointed. Seems like mass production is the theme there now.

      Legal Seafood has been mentioned here before- its now a huge chain, but still good. Geeze, they even have one in New Jersey.

      My favorite chowder comes from Turner Fisheries – kind of fancy for dinner, its over near Copley Place.

      The best seafood I have had recently was at the Daily Catch. Their home base is in the North End, it’s set-up like a diner. Excellent food!! I see they now have another one on the waterfront near the Moakley Courthouse – don’t know anything about that one.

      In that same area is the Barking Crab. I have paddled my sea kayak from Quincy into Boston Harbor and docked at their pier for lunch. Needless to say, it is informal and very good food.
      • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
      • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
      • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
      • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
      • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
      • 2011: Brigham & Women’s - Medtronic ICD implant

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