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Son able to Help Doctors

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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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  • Son able to Help Doctors

    Two days ago a young 9th grade football player died in Atlanta. I posted the newspaper articles in the Sudden Death Forum just a little bit ago. I had taken James (diagnosed in January, and ICD implanted in April) to the pediatrician on Tuesday (yesterday). The doctor was well aware of this young man's death and new of course of James' diagnosis. He had all the doctors in the practice to come in and listen to James' heart and put their hand on his chest to feel the way the heart beats differently in this disease. He was telling them that it is so suttle that doctors miss it all the time. Most of the doctors there had never heard the murmur or diagnosed this disease in any patients. He was telling them that missing this diagnosis could cost someone their life. Their practice does tons of school physicals. This young man that died had had two phyicals earlier this year and it was missed on both physicals. I told James that he could very well contribute to saving someones life by allowing those doctors to listen to his heart and feel his chest. It seemed to make him feel good. He told me how glad he was that he has an ICD now. I am just so thankful we know about James and he can't end up an article in the newspaper! It's a shame that more doctors can see actual patients with known diagnosis of this disease so that they do know exactly what it sound like.

    1
    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 glad that you and James are able and willing to help others learn more about HCM so that it isn't diagnosed improperly (or not at all) as often.

    Reenie
    Reenie

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

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    • #3
      YEH James! Education is the key - his help WILL help others.

      Best wishes,
      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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      • #4
        That is good. Sometimes when seeing a non-cardiologist doctor I have encouraged them (and/or their nurse, student doctor, etc.) to spend time listening to my heart purely for their own education. This is a reminder that it is a good thing that all of us can do. Also to realize that it is good if we make the connection for the doctors (if needed) that this is the same condition that can kill active young people, especially if undiagnosed. I guess they might also need to know that it can be much more subtle sounding than ours may be--my original cardiologist compared the sound of my heart to the agitator cycle of a clothes washing machine... (he's right )

        Best wishes to you and your son, I hope he's doing well now, Lisa Inman

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        • #5
          hcm?

          I read the articles and I gather they still have not figured out if it was HCM or not?

          Sandy

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