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  • my brother

    [my brother]

    Author: Kelly (---.dsl.chcgil.ameritech.net)

    Date: 08-01-02 13:52

    My brother was diagnosed in 1993 with HCM. He was treated with drugs and always told me that it was manageable as long as he took his medication and did not over exert. He died suddenly on Saturday, age 41, and we are so shocked. He has a 6 and 7 year old that have had Echo's and will have them every year. I have had one and he said we (there are 6 siblings) should have them every 5 years. Two of my brothers have not been tested yet. Is it totally genetic? Should our kids be tested too? Should we have them more often? Could something have been done to prevent his sudden death? To be honest, I did not know that it could kill him. He always told me he saw his cardiologist regularly and everything was fine. Did he know more than he was telling us? I appreciate any information that can help my family deal with our loss.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: my brother]

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

    Date: 08-01-02 14:17

    Dear Kelly

    I am so truly sorry for the loss of your brother. I know that this will be a very hard time for you and all your family. Please know that everyone at the HCMA feels for you all.

    As for your questions: Yes, HCM is genetic and is always (except is very rare cases) genetic. And everyone, your parents and all your siblings and nieces and nephews must be tested. You should probably retest if it has been more than a year since your echo. You should test your kids, as it sometimes, albeit rarely, skips a generation.

    The risks for sudden death are as follows:

    a family history of sudden death, a personal history of ventricular tachycardia, fainting spells, heart attack, and an adverse blood pressure response to a stress test. A major risk factor is having a septal wall measurement of 3cm or more.

    Not knowing your brother's actual medical history or the specifics of his case, (and not being a doctor!) I can't tell you if "everything" was done for him. However, if your brother was having regular echos (if you have HCM, it should be every 1-2 years) and his septum was less than 3, and there were no other risk factors, then everything was probably done. However, I would order all of your brothers medical records and an autopsy, if you can, since it will help the rest of the family's treatment.

    Now that sudden death IS in the family history, everyone needs to be evaluated very carefully. There are implantable defibrillator-cardioverters that they put in people with a risk of sudden death and they reduce your risk by 90% or more.

    Please call the office at 973-983-7429 to get the name of an HCM specialist. This is the most important part because only an HCM specialist (and most local cardiologists are NOT) can evaluate you properly.

    take care and you have my utmost sympathy,

    Sarah

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    [Re: my brother]

    Author: Kelly (---.dsl.chcgil.ameritech.net)

    Date: 08-01-02 15:05

    Sarah, Thank you. I have called the number for doctor information and left a message.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: my brother]

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

    Date: 08-01-02 15:10

    Dear Kelly,

    You are very welcome. Let us know how you are doing from time to time.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: my brother]

    Author: Lisa Salberg (208.47.172.---)

    Date: 08-02-02 11:19

    Kelly,

    I can not put into words how sorry I am for your loss. I understand all to well what it is to loss a sibling to HCM.

    I will call you either tonight or Saturday to go over details.

    Regards,

    Lisa Salberg

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