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  • Screening/Defibrillators


    Author: Kathleen (---.proxy.aol.com)

    Date: 08-29-02 00:45

    I am new on this web site and do not know a lot about HCM. So if some of my questions are idiotic please humor me.My nephew who is 9 years old was diagnosed with HCM 2 years ago. His father (my brother) and mother were both told to be screened as well as his younger brother. My brother and my father were both diagnosed with heart murmurs. My brothers heart murmur was diagnosed at birth and my fathers was diagnosed ln his late 20's .None of them feel the need to be screened. I do not understand why their cardiologist doesn't pressure them more even though they should be smart enough to get this done!! Do I need to be screened? They did have their other son screened and was told he did not have HCM. Since the screening, his brother has had heart palpitations and arrithmyias . Does that mean he is free and clear for life or should he be tested every year??

    My nephew with HCM was just told that he needs a defibrillator. Can you offer any information about this surgery and what this entails? I read in your home page that this means he is at high risk for sudden death. How do they make that decision? I have asked my brother but he wasn't sure. Since my nephew was diagnosed at a young age could this mean that it is more serious than being diagnosed later in life?

    I hope you can follow this e-mail and someone can help me out.




    [Re: Screening/Defibrillators]

    Author: Sarah B.-Board Moderator (---.client.attbi.com)

    Date: 08-29-02 02:34

    Dear Kathleen,

    Most of us have dealt with family issues like this; it is not uncommon for people to prefer to ignore it than deal with it particularly if they are working with outdated informatin that says that there is no treatment (as some old-school doctors think).

    The HCMA has information packets that can be sent to all of your family members and to their doctors if you e-mail their names and addresses to [email protected] (this is totally confidential and private!!!). I highly recommend that you do this since they need to know that HCM patients live full life spans --assuming they get proper treatment and medical care! The brother who is not getting the ICD may be at risk for sudden death as well. The HCMA can help them find a pediatric specialist.

    You should be screened for HCM ASAP. Since your father has a "murmur" (and the other family history)--it is highly likely that he has HCM, which means that you have a 50/50 chance of having it. Each of his children do, as do any offspring of someone with HCM. If you have kids, they too should be screened. The guidelines for screening are every 1-2 years in childhood, every 2-4 years in the 20s and every 5 years after 30. Most HCM shows up in the teens to 20s so a clean echo at 10 (for example) or under is not proof that you don't have it. This is why your other nephew is probably at even higher risk since they have assumed that he is "clear" due to the earlier echo.

    If you nephew(s) needs a defibrillator --that is a HUGE red flag to the rest of the family that there may be others who need one too. Implantable defibrillators-cardioverters (ICD)s are installed if you have two or more risk factors:

    Family history of early/sudden death with HCM.

    History of cardiac arrest

    History of arrthymia - VT or repeat NSVT (ventricular tachycardia)

    Mass hypertrophy - septal measurement of 3.0 or greater

    Adverse blood pressure responce on stress test (blood pressure goes down or doesn't go down fast enough after test)

    Fainting/passing out more than once

    Please visit zaplife.org for the details on ICDs. they are not affiliated with the HCMA but they have a detailed site on the ICD and living with it, etc.

    Please also read the rest of this web site's info on HCM and some of the other threads in this board as there is a lot of information here.

    I hope this helps and please let us know how it goes and what your echo turns up.

    good luck,



    [Re: Screening/Defibrillators]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-29-02 06:57

    Ditto to what Sarah said...

    GET SCREENED..the entire lot of you. If you need more information call the HCMA.

    NOTE: This is a post from the previous forum message board.

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