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  • Another Story

    [Another Story]

    Author: Lori (---.dialsprint.net)

    Date: 10-08-02 21:13

    Less than two weeks ago I went to the doctor because I was short of breath, light headed (more than normal) and felt butterflies in my heart instead of my stomach. (no pain mind you)

    You guessed it diagnosed with HCM.

    On Friday Oct 4, 2002 they put in an ICD unit and today I am on day two home from the hospital. A little uncomfortable but feeling very safe knowing my little "paramedic" is monitoring my heart.

    The Doctors at the Cedar Rapids United Heart Assosiates are a great team and did a great job.

    Now the question, I have two daughters that need to be tested. What are the best, most acurate tests to run? I would like several opinions to see what you come up with.

    I am uncomfortable in the area were they inserted the ICD and have bruises from the catheterizations, but am a lot better off than when I went to the doctor two weeks ago.


    [Re: Another Story]

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

    Date: 10-08-02 21:19

    Lori -

    Welcome to the club you did not want to join... we are happy to have you

    Your children must be screened ASAP. EKG, ECHO, and a check up by a cardiologist who knows that HCM runs in the family and it is best if they have some expereince in HCM. If you need help finding someone let us know.

    I too have an ICD.. you get use to it faster than you think.

    Best wishes,

    Lisa Salberg



    [Re: Another Story]

    Author: Lori (---.dialsprint.net)

    Date: 10-08-02 21:30

    How do I sign up >

    Also, the tests are being performed and read by my cardiologist. I just wondered about which tests. I noticed that some of the children that were tested went unnoticed. My girls are 12 and 18 lets pray its not to late.

    There is a heart center in Cedar RApids Iowa not 15 min away from us. What a blessing!!!!


    [Re: Another Story]

    Author: Tom (---.eosinc.com)

    Date: 10-08-02 22:41

    Hey Lori. Sorry about the diagnosis, but glad you found us! As you read the messages on this site, you'll read over and over how important it is that you find a cardiologist who specializes in treating HCM. I know nothing about the center where you are being treated currently, nor do I doubt anyone there. However, this disease is so complex that it really requires someone who deals with it a lot. I made the switch and what a difference it made for me. Sounds like you're new enough to HCM that you haven't had the good fortune of talking with Lisa on the phone yet. You should call the HCMA office, sign up for a time slot and become a member. Lisa can give you recommendations on specialists in your area and who knows...maybe one is right there in Cedar Rapids!

    Good luck to you.



    [Re: Another Story]

    Author: Lori (---.dialsprint.net)

    Date: 10-08-02 22:55

    Yes, I have noticed the stress on an HCM specialist. I look forward to looking into this.

    What's the number to call her?

    Do you know about the book that is available on HCM.


    [Re: Another Story]

    Author: Erica Stolzenberg (---.atlnga1.dsl-verizon.net)

    Date: 10-08-02 23:35

    Lori ... The number to reach Lisa is 973-983-7429. Here is the link to the membership page. It contains all the contact information you are looking for. http://www.hcma-heart.com/membershipinfo.html You can also open this page by clicking on the "Membership Info" link at the top right section of this page.

    One of the wonderful features of this website is that you can search for specific information (from older postings) by choosing the search option at the top & bottom of each page on the Message Board.

    Regarding the HCM book, I feel your anticipation! I just ordered the book and I can't wait to receive it. Let Lisa know you would like to become a member and receive the book!


    [Re: Another Story]

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

    Date: 10-09-02 00:58

    wow, in a few months, I won't have to moderate this board. Erica and Reenie will have all the answers down and I can go on vacation!! Cool beans!

    ------------ ; ) ------------------



    [Re: Another Story]

    Author: Julie E (---.fuse.net)

    Date: 10-10-02 14:03

    Hi Lori,

    I too have an ICD. Have had it for 3 years now. It is such a part of my body unless I look at it or touch the area, I don't feel it. As with anything it will get better with time.

    I also have 2 children. My 15 year old was evaluated last year and is OK for now. The EP wants to see her again in 2 more years.

    My 10 year old son was just evaluated again last week. He looks OK except he does have a flipped T wave which might just be the way his heart is. The Dr. is not concerned with that at this point. He has had it ever since he was first evaluated 5 years ago The EP wanrs to see him in 2 years as he will be heading toward puberty then.

    Hpoefully they will continue to check out OK and theis HCM will end with Me!!!

    Good luck to you!

    Julie in Cincy


    [Re: Another Story]

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

    Date: 10-12-02 09:39

    Dear Julie,

    You don't say what your ten year old's echo says. ECGs are not enough, they need to be having echos. Inverted T waves are very, very prevalent in HCMers.

    Have they had echos?



    [Re: Another Story]

    Author: Julie (---.cinci.rr.com)

    Date: 10-12-02 22:40


    His echo last week was normal. When he was checked at age 6 the EP told me that you tend to see the inverted T wave in HCM, but by having it , that it does not mean that he has HCM. It is unchanged this year from last time. I think he will watch him closely through the teen years, but he did say 2 years for next time. I have always been more worried about him than my daughter because of the T wave thing...but hopefully we will find out in years to come that his heart is just that way!

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

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