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  • new to site, lots of ???????????

    [new to site, lots of ???????????]

    Author: robin crain (---.156.76.139.Dial1.Dallas1.Level3.net)

    Date: 05-25-02 18:44

    hi, i am glad to find people with the same condition. my husband was diagnosed a month ago. he has had all the tests done. we have to go back in two weeks to see what the dr has to say. question? what quality of life do most people with the meds. he has events daily, even walking. has also passed out a few times. dr has taken hime off work and driving. we are concerned about him going back to work and just resuming normal activities. thanks for any feedback.

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    [Re: new to site, lots of ???????????]

    Author: Chuck Morrell (---.proxy.aol.com)

    Date: 05-25-02 19:44

    Hi,

    You arrived at the right place. Lisa knows all. Have you learned abput ICD's yet???

    If not, Please start learning.

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    [Re: new to site, lots of ???????????]

    Author: Chuck Morrell (---.proxy.aol.com)

    Date: 05-25-02 19:46

    Sorry, That's ABOUT ICD's

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    [Re: new to site, lots of ???????????]

    Author: sarah beckley -moderator (---.dialup.mindspring.com)

    Date: 05-25-02 20:02

    Dear Robin

    The quality of life varies greatly depending on your personal expression of HCM --that is: how thick is the septum? Is there any obstruction? What is the outflow tract gradient? Some people only need medication to be fine and others need a myectomy or an ablation, while still others get an implantable cardioverter-defibrillator (ICD) or ICD/pacemaker.

    These terms are all explained elsewhere in this web site and in Lisa's book on HCM (which I highly recommend --973-983-7429 to order). You can also call and get the name of an HCM specialst, too. Sounds like hubby may need to be evaluated for an ICD since he is fainting all the time.

    keep us posted and hang in there ---life may not be the same but it can still be very good.

    Sarah

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    [Re: new to site, lots of ???????????]

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

    Date: 05-26-02 12:56

    Welcome,

    You are in the right place and are happy to have here. I suggest to read the posting from worried wife. Spend some time reading the web site and the message board. HCM is a highly variable condition... this creates a great deal of confusion from physicians and patients alike.

    I will leave you with one fact about HCM, most patients with hypertrophic cardiomyopathy leave to or surpass the average age of mortality which is 73 years in the United States.

    Living with chronic illness is not easy to use to... but give it time it will happen.

    Best wishes,

    Lisa Salberg

    President

    HCMA

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    [Re: new to site, lots of ???????????]

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

    Date: 05-26-02 23:40

    PS... please excuse some the typos and misssing words I am still attempting to customize my voice activated entry system,,, and sometimes it misses words and others well... it makes up what it thinks my NJ accent is saying.

    BUT it does save a great deal of time!

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

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