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Help! Scared by last doctor visit!

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  • Help! Scared by last doctor visit!

    [Help! Scared by last doctor visit!]

    Author: Jacki (---.kvalley.com)

    Date: 08-13-02 22:29

    Hi,

    My sister has HCM and she just had to switch doctors because her doctor went to do some reasearch in another state. The newest doctor she went to scared her really bad by telling her that if she didn't get defibrilator put in she would probably have heart failure. Although a defirilator was suggested by her last doctor he said he didn't think it was an extreme necessity last year. She isn't having any symptoms at this point yet, except for she has a little tiredness if she over does it. She has always been really healthy. The new doctor looked at her echo from when she was 15 (she is 19 1/2 now) and our family history my mom died at 52 from HCM and complications and said she was in danger. He said that at 15 she really didn't even have a problem (which her other doctor could see that she did) and that her heart was so much worse since then. He made her feel like over the past year her heart has gotten very drastically worse! I'm not really sure on the numbers they got of her heart or if these will even make sense to any of you but he said the top of her heart (and I think that these are measurements he got fromt he echocardiogram) was 15 and normal but at the bottom of her heart it was 19 and 22. Does that make any sense to any of you? What does it mean? Also if any of you have had to have a defibrillator put in I have some questions for you. Her first cardiologist said that he would have to stop her heart to put it in then shock her back. That is why she opted to wait a few more years. The new doctor said that they didn't have to do that. Do they have to do that? If you have had one implanted, could you please tell me about it. She really wants to hear from people who know what she is going through. Thank so much and sorry for this long post!!!! Jacki

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

    [Re: Help! Scared by last doctor visit!]

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

    Date: 08-14-02 08:49

    Jacki,

    I can understand everyone of your questions... and your concern. Let me first say that it is our goal to answer as many questions as possible...and help you and your family find the best care.

    I can not say from the information you have posted if your sister falls into the area of HIGH RISK... However it sounds like she very well may.

    If she is then an ICD is what she needs and I understand her concerns with having one implanted, I had many of the same thoughts and concerns before I had mine done (that was in 1997).

    I would suggest you call the office and we can talk about this. You can reach the HCMA at 973-983-7429.

    Best wishes,

    Lisa Salberg

    President

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

    [Re: Help! Scared by last doctor visit!]

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

    Date: 08-15-02 13:23

    Dear Jacki

    I know that HCM and ICDs can be very, very scary, but have your sister read this message board as there are many posts about ICD surgery experiences k---in addition to talking to Lisa, of course. But it is good to know you are not alone.

    hang in there,

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

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