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A New Family


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  • A New Family

    [A New Family]

    Author: Amy (192.76.86.---)

    Date: 08-26-02 16:56

    My name is Amy and my soon to be Husband Shayne has HCM. He been dealing with this since he was about 25, as many of you might have read he writes on this board too!!! He is beyond a great guy and dealing with this is a big change for me. My mom was a Cardio Nurse for about 28 years and I heard stories for many years, I just never thought that I would have a husband that had a heart disease. I am learning and educating myself to the best if my ability. He has a older brother that does not have any problems but he has a 17 year old brother that has been diagnoised also. We are are getting married and hope to start a family the middle of next year. We have asked his doctor if there is anything that we needed to do to be cauctious and educated about our children. He said go at it the nature way, which is what we wanted to do, and than we will test when they are about 10 months old, Is this what any of you have done after having children? Do you know what the odds are that your children will have this? I know some of these questions can not be answered, and they will be God's will just wondering if they had told anyone anything different. I want to be educated and understnad this disease because I have to deal with it the rest of my life. I am a strong person but know there will be a lot of challenges throughout my life.

    Shayne is also having the difibulator put in the end of September beginning of October, he currently has a pacemaker and his doctor said this was for cautionary reason.

    I have read and talked to many people and I always get different answers on the next question: Do people live as long if they have HCM????

    Thanks for the support and help!!!


    [Re: A New Family]

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

    Date: 08-26-02 17:39

    Dear Amy,

    Please call the HCMA at 973-983-7429 to get on the mailing list and to order the HCMA's Patient's Guide to HCM which will answer your questions really well and is very helpful. Also, I highly recommend reading the rest of this web site's info on HCM and a lot of the other threads that sound interesting to you. You should also make sure that your husband is seeing an HCM specialist and the HCMA can help you find one, too.

    Since you don't have HCM, the pregnancy and labor should be normal -assuming you don't have any health problems of your own. Your child will have a 50/50 chance of having HCM. All children should get echos and ECGs every 12-18 months while they are growing, every 2-3 years in the 20s and every 5 years after 30 (late onset HCM does happen although usually shows up in teens and 20s).

    Who is putting in the ICD for Shayne? How many have they done?

    YES!! Most HCM patients live their full life expectancy.

    take care,



    [Re: A New Family]

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

    Date: 08-26-02 19:17


    Please read other posts on pregnancy as they contain information on screening children pre and post birth. Most children will not develope clinical signs of HCM until about age 12-14.

    Most patients with HCM live to or surpass the average age of mortality in the USA (which was 73years when that data was published!)

    Welcome to the HCM world...one you may not have wanted to join but are part of anyway...We all try to make the best of it here and thanks to this message board you may also find some friends who really understand!

    Best to all... and congratulations on the wedding!

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

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