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LauraKirkbride Find out more about LauraKirkbride
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  • Just a quick question

    Hi everyone this is my first time on this site - i didnt actually think anything like this existed. To be honest i didnt know anything about HCM until my dad died 4 yrs ago when i was 13 - he was one of the sudden death victims n we didnt find out until after what the cause was. anyway my question is will i need to get any scans or anything cos im not really very informed about things! Also, we were told that my dads alcoholism could have made a difference 2 his condition so will HCM still be likely to affect me?

  • #2
    Re: Just a quick question

    Welcome, Laura! You have come to the right place for answers and support. I'm sure others will be helping you out. I would strongly suggest in yes, having an echocardiogram done by your physician and any other testing he or she may want to do. There are some HCMers wo are at risk for "sudden death".
    \"It is not length of life, but depth of life.\"

    Ralph Waldo Emerson

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    • #3
      Re: Just a quick question

      Hello LauraKirkbride,
      Welcome to the HCMA message board. I am so sorry to hear about the loss of your Dad. Eventhough time heals all of our wounds, it will always be tough, especially around the holidays. I lost my 20 year old son to undiagnosed HCM and it was sudden. That was 3 1/2 years ago and I will always miss him. Blessings to you and yours for the loss that you have had to endure. Maybe this is your Dad's way of saving others in your family.

      I can't answer the part about his alcohlism. It probably didn't help, because alcohol dehydrates the body and people with HCM need to stay hydrated or they have more severe HCM symptoms-shortness of breath, chest pains, heart palpitations and dizziness.

      You definitely should be screened. I know that here are others on the board that can answer the specifics to the number of times you should be checked, but I think in your teen years you will want to be screened annually. That is due to the unfortunate sudden death that your family has had to endure. The chances that you could have HCM are 50/50. So, until you know, it's better to be safe with an annual check up.

      Early detection is the key to a long productive life with HCM. HCM is not a death sentence when detected early. HCM is a manageable condition. Check out the rest of the web-site and give the HCMA office a call. I'm sure Lisa would be available to speak with your mother and/or you, too, when you are ready.

      It's good that you are educating yourself. Take it one step at a time. We are here for you no matter what!

      Love & Blessings for the New Year!
      Sharon Bates

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      • #4
        Re: Just a quick question

        dear laura,

        i'm very sorry to hear about your dad. i lost mine 4 years ago, so you have my deepest sympathy.

        regarding you -- i am not sure if the doctor meant that alcoholism made your dad more likely to die suddenly or if he was thinking that he had HCM caused by alcoholism instead of a genetic mutation. the only way to know is to ask what they meant and if they did a biopsy of his heart to determine the cause (if they didn't do a biopsy, then they are guessing).

        if they are 100% sure that it was alcoholism-induced cardiomyopathy, then you need only avoid alcohol.

        if they are unsure, or know it was HCM, then you need to have an echocardiogram (it's just an ultrasound on your heart) every 2 years till you are 30 and then every 5 years. AND avoid alcohol because the addiction runs in your family and because it dehydrates you and is very dangerous to HCMers--which is why i can't tell what the doctor meant. if your dad had HCM and got dehydrated, that could have been the catalyst for his death.

        if your dad has any siblings and living parents, they should all get echos too.

        Having HCM DOES NOT mean you are going to die. The vast majority of HCMers live a full life span (70s-80s --we have a 92 year old here!) There are treatment options if you have symptoms and if you are at risk for sudden death, then they can treat that too (see the ICD/Pacer thread here for more info on those).

        take care and let us know how you are doing. we can also help you find a doctor if you need one.

        best wishes,

        sarah

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        • #5
          Re: Just a quick question

          Welcome to the HCMA message board. I am very sorry to hear about your dad but am glad you finally found us.

          Please call us at the HCMA office (973-983-7429). Lisa would be happy to talk to you and/or other family members and answer any questions you have.

          Kelly
          Life is 10% what happens to you and 90% what you do with what happens to you.

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