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raphiel15 Find out more about raphiel15
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  • Hello

    Hi my name is Cullen I am 14years old and i just found out that I have hcm and I am really scared I need some support on what i should do plus mabey soon (not sure yet) I might get and icd put in and i need help cause im worried but my sister quincel got hers put in on halloween so if u could pleez give me some support that would be great
    Last edited by raphiel15; 12-22-2006, 03:39 PM.
    Cullen R.Dunn

  • #2
    Re: Hello

    Hi Cullen. I'm sorry nobody has written you yet. It's a bit slow here with the holidays. I know you will come through the ICD surgery just fine if they decide you need one. You're in my thoughts.


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


    • #3
      Re: Hello

      Hey Raphiel,

      Your sister is on the board too right? I'm glad you have started writing to us. We are a great support system here. I'm 26 now but was diagnosed at 21 and had my first AICD put in at 22. It was a breeze even though mine was recalled two years later and I had to get another one implanted. You will be sore for a couple of days. The hardest part is remembering not to lift your arm above your head.

      Keep asking questions on all parts of the board. We will answer just slow with the holidays and all!

      Have a happy holiday,

      Mary S.


      • #4
        Re: Hello

        Hi Cullen! I'm the same age as you, seriously.

        I've been living with HCM since I was a baby, and I know it's hard. There are somethings you can't do now, but there are other things you can do to keep you occupied. Anyway, we're all here if you need help with dealing with it.

        IM me anytime.

        Diagnosed - April 1992 (age: 2 months old)
        Myectomy - June 2002 (age: 10)
        Propanolol: 120mg (morning & afternoon), 90mg (evening)
        “The person worth listening to is often the quietest person.” — Japanese proverb
        “When you paint a dragon, you paint his scales, not his bones; when you see a man, you see his face, not his heart.” — Chinese proverb


        • #5
          Re: Hello

          Hi Cullen,

          It is ok to be scared that is normal. I was dx with HCM at age 48. It took me four years of my drs. begging me to have an icd implanted. It was not until iI took a trip to Boston, to decide to have my icd implanted. I was petrified.

          After four years of wondering if I would wake up the next day, due to sudden death, (family history) I could not believe I put myself through that nightmare, all because I was scared. So you see young or older we have our fears.

          When I woke up after the implant and all went well, I have not had that thought since. Push your fear aside by thinking happy thoughts or reading a book.

          Have trust and faith in your doctors, they know what is best for you. Like I told your sister, don't sweat the small stuff, live, laugh and be happy. Besides worrying gives you wrinkles..........