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My 5 month old born with HCM

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  • My 5 month old born with HCM

    [My 5 month old born with HCM]

    Author: Laura Smith (---.bardstowncable.net)

    Date: 10-07-02 10:39

    My daughter, Autumn, now 5 months, her condition continues to worsen, they are planning a cath in two weeks and then surgery. They are going in a thinning the inner wall of the heart where it is so thick it is causing an obstruction. I am in Kentucky, should I be concerned with who will do this surgery, how dangerous is this surgery? They have increased her inderal as much as they can and it has not improved her condition, I guess I'm just looking for someone with some information on this procedure.

    Thanks!

    Laura Smith

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    [Re: My 5 month old born with HCM]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-07-02 10:58

    I would definitely be concerned with who performs the surgery. You wouldn't want anyone other than an HCM specialist performing the myectomy. You can read about the procedure on this website under the treatment section on the home page. Here is the link: http://www.hcma-heart.com/treatment.html

    Please contact Lisa with the HCMA at 973-983-7429 and get a list of HCM specialists. Lisa and Sarah are wonderful with providing valuable information on HOCM in a timely manner!

    Autumn and your family are in my prayers!

    Best regards,

    Erica

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

    [Re: My 5 month old born with HCM]

    Author: Laura Smith (---.bardstowncable.net)

    Date: 10-07-02 11:23

    Thanks, Erica

    I tried to reach Lisa and received an answering machine, I just called my insurance company and they said as long as the doctor was a participating physician I could get a second surgical opinion. My doctors are here in Louisville, Kentucky. Pediatric Cardiology Associates. I hope Lisa reads this and gives me a call. 502-348-9003 (ext. 143)

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

    [Re: My 5 month old born with HCM]

    Author: Erica Stolzenberg (---.biz.dsl.gtei.net)

    Date: 10-07-02 11:44

    Laura ... I forwarded your email to Lisa ... her email address is [email protected] and I also sent your email to Sarah, the board moderator, at her personal email address [email protected]

    I take it Autumn has HOCM? My father has HOCM. There is so much information available if you know where to find it. Let me know if you would like any help finding links on the Internet! I have them all saved on my home computer and would be glad to forward them on when I get home from work this evening.

    As for your insurance ... I know first hand from reading this site (prior messages posted) that you can appeal if your insurance company doesn't want to cover the expenses. I am not sure about the practice you are seeing but I do know how imperative it is to make sure someone who specializes in HCM treats your daughter. A regular cardiologist just isn't the same as seeing an HCM specialist! Again, let me know if you would like me to email you the links this evening!

    Smile : )

    Erica

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    [Re: My 5 month old born with HCM]

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

    Date: 10-07-02 12:17

    Hey guys...I spoke to Laura today and she is set up with a path to follow.

    Thanks to all for your help!

    Lisa

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    [Re: My 5 month old born with HCM]

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

    Date: 10-07-02 15:29

    FYI: lisa and I were both at a medical conference all weekend. whew. glad to be home. will share all the fun in the newsletter!

    S

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

    [Re: My 5 month old born with HCM]

    Author: betsy trawick (---.atl.client2.attbi.com)

    Date: 10-07-02 17:40

    You must look into having Dr. Kirk Kanter at Egleston Children's Hospital in Atlanta Ga. do your surgery - this man is next to GOD. He did a myetomy on my son in Dec. - results were way better than ever dreamed of - additionally, he did a heart transplant on my nephew. Good luck in your search - but I would look no further than this guy.

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

    [Re: My 5 month old born with HCM]

    Author: Laura Smith (---.bardstowncable.net)

    Date: 11-05-02 15:40

    Dear Lisa,

    It has been a while since we spoke. Autumn's cardiologist has sent all of her records to Barry J. Maron at the Minneapolis Heart Institute. I think I read somewhere that you wrote a book with Dr. Maron. Can you give me some input, the heart board met last week and said with all their years combined they have never seen a worse case of HCM. Autumn's gradiant is 150, what does that mean exactly?

    Thanks,

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

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