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my story


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kiwigirl Find out more about kiwigirl
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  • my story

    hey there all,
    i don't have hcm - or at least if i do, i don't know about it yet. im supposed to get another check in a few months times, when i turn 20.
    my older brother died three years ago of it. he was 18. i never knew it would end him, all i had been told when he was diagnosed about 6 months before was that he couldnt be an All Black. he was cycling up a hill and apparently he just fell over and died. i wasn't there, i wasnt even in the same country - i was on student exchange at the time, so i flew home for his funeral. its ironic that the last thing he had said to me was "see you in a year". it makes my heart break to think of him.
    wow, this is a depressing story isnt it. but i dont know, i guess i wouldnt mind hearing from someone who knows what its like to have it.
    its really cool to read all your posts in this forum.
    see ya,

    kim the kiwi girl

  • #2
    I'm glad we're here for you. I'm really to sorry to hear about your brother's death. I hope that your own tests are clear. Feel free to stick around and ask all the questions you want.


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


    • #3

      The last thing I said to my sister was 'talk to you later, bye!". That was over the phone 9 hours before she had her cardiac arrest and fell into a coma. It can happen so fast - and the things we take for granted, like our brothers and sisters, can be gone in but a moment. The week prior to her death my sister helped in giving me a baby shower, she missed meeting my daughter by 1 month, this breaks my heart to this day - nearly 10 years later.

      Tomorrow is the 10th anniversary of her cardiac arrest, the day my world for ever changed and I took on battleing my one enemy - HCM. HCM has taken so much from me and from the world that we must band together to fight it - raise awareness, research, and someday understand this tragic disease at the ulimate level - a cure - someday maybe a cure.

      I know your pain all too well. I pray that you do not have HCM and that you maintain your screenings in order to protect yourself.

      Take care!
      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)


      • #4

        heya kim

        sorry to here about your brother , i lost my grandmother and aunty to it ,i never meet them they died be4 i was born but i know wat it feels like losse peole to sumthink u cant do anythink about

        wat part of new zealand are you from ??? im from nz 2 smal world, im from Rotorua

        take care
        Forever Young

        I was diagnosedwith HCM at 6.
        Went into Atrial fibrillation so had a ICD put in at 16
        Went into Heart failure at 17
        Got a heart transplant at 21(2009)


        • #5
          I never lost anyone to HCM. I am the first and so far the only person in my family with HCM. My family doesn't know much about it I really want them all to learn as much about it as they can I feel so hopeless though because the only family member who has even tryed to learn about it is my dad not my mom or any of my brothers. then only one of my good friends even comes to this site she even has posts. I would love it if my family had as much concern or want to know more about what i am going through as you do about your brother I am 19 and I have had HCM my whole life. if you ever want to talk I am always here you can email me any time. I hope your test come back clear and you don't have HCM.
          Love to All
          Stay youthful in all you do


          T-Bear Everlasting

          aka Resa


          • #6
            im the only one in my family who has it this bad. others who have it in my family barely do. my doctor is doing genetic research ont HCM. we will find a cure.


            • #7
              well im 16 from Omaha, Nebraska