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Chicagoland Specialist

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  • Chicagoland Specialist

    [Chicagoland Specialist]

    Author: Carrie (---.proxy.aol.com)

    Date: 11-11-02 21:41

    Hi everyone. I need help from anyone in the Chicagoland area.

    My name is Carrie. I had my ICD implanted in July and have had one doctor appointment with a local cardiologist who treated me like I was 80 years old (I'm 23). Anyway, I've moved since my last doctor appt. and I'm looking for a new doctor that I can do my every 3-4 months check-up. I'm living in Palatine now and am looking for a nice person who knows a lot about HCM and who individualizes patient's treatment (my old doctor has not allowed me to exercise or do anything strenuous, which has been really hard for me because before I was diagnosed I worked out all the time and besides the HCM I'm in excellent health). Any suggestions would be really appreciated. Thank you!

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    [Re: Chicagoland Specialist]

    Author: Carrie (---.proxy.aol.com)

    Date: 11-11-02 21:47

    Sorry I forgot one more thing...Is HCM genetic? When I asked my last doctor, he gave me some crazy answer that didn't really answer my question. I'd really like my family to be tested because I've heard that heart disease is hereditery and I want my family (mom, dad, sister, and brother) tested. Do my cousins need to be tested? I am in the only one in my family who has ever had any problems with their heart (I had a murmor when I was born and then I started fainitng a lot which lead to the discovery that I had HCM...I was invovled in a very bad car accident when I fainted while driving and hit a semi....I'd really like my family to be tested so that they don't have to go through what I did). So, my first question is: IS HCM genetic? And my second question is related to my last posting, which is I'm lookign for a good cardiologist in the Chicagoland area who knows a lot about HCM so that my family can get tested and someoen I can see every 3 months. Thank you!

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    [Re: Chicagoland Specialist]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 11-11-02 21:59

    Carrie,

    I can't help you with a specialist, but you can call Lisa at 973-983-7429 and I am sure she will help you. To answer your question about whether or not HCM is genetic, Yes. Your parents and siblings should be tested. Your cousins might be at risk too, depending on which side of the family the gene came from and which side they are on. Start with the immediate family. They should have EKG's and echos to determine whether or not they also have HCM. Although you should be seen by a specialist, they don't need to be seen by one for the screening. But the techinician who does the echo and the cardiologist who reads it should know about the family history. You need to know that *rarely* the gene "skips" a generation. Meaning they might have the mutant gene and not show, or manifest, the disease. This isn't likely, but it does happen. Thank you for sharing your story and good luck finding a new doctor. Take care.

    Reenie

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    [Re: Chicagoland Specialist]

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

    Date: 11-11-02 22:13

    Dear Carrie,

    I live in Chicago (Bucktown) and I'm 33. Please e-mail me your phone number at the address above and we can talk doctors --you should also talk to Lisa at the HQ -973-983-7429. (don't post your phone number here!!)

    Please read the rest of this web site for information about HCM and share the link with your family so they can read abou it, too. Very rarely, HCM can be caused by other things but this would be highly unlikely and the safest course --especially since you fainted and need an ICD, is for everyone in your family to get screened incase anyone else may need an ICD too. Sadly, HCM can "run silent" for a long time before it hits.

    As for working out, you do need to be very careful and you should seriously avoid it until we hook you up with a local doctor who can help you figure out what you should avoid and what would be ok.

    take care,

    Sarah

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    [Re: Chicagoland Specialist]

    Author: Kay (204.184.29.---)

    Date: 11-12-02 09:58

    Yes, HCM is genetic and I encourage you to have everyone checked. My doctor suggests everyone to be checked every 3-5 years. It may show up later in life. My family history is proof of genetics. My mom passeed away 9 years ago at the age of 56. Me, my 3-year old son, my brother, both of his kids age 10 (who just passed away last week) and age 15; my sister and one of her kids age 13 have all been diagnosed. My sister and I both have defibulators and my brother is getting one implanted on Thursday.

    Please please encourage your family to be tested. It could save their life!

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    [Re: Chicagoland Specialist]

    Author: Robert Hartwell (192.35.79.---)

    Date: 11-14-02 16:52

    Carrie,

    I live in arlington heights. The best person I have found in Chicago is Dr. Bob Bonow, head of Cardiology at Northwestern. He is not in the top experts but he knows a lot more than most about HCM.

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

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