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Mother just diagnosed


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  • Mother just diagnosed

    [Mother just diagnosed]

    Author: Nicole (---.dslgw2.brbn.qwest.net)

    Date: 12-16-02 09:00

    Hi Everyone;

    My mother called me this weekend and told me she tested postitive for HCM. We first found out about this when her brother was diagnosed and they said all his siblings should be tested. My mother wasn't totally informed either when she told me about it this weekend so I decided to do some internet investigation. I thankfully stumbled upon this site. I will need to be tested now but I have two main concerns. First I have medical coverage through the Navy and they are notorius for not being thorough sometimes. So I want to know exactly what I need to be asking, i.e. what tests should I expect, what do I need to ask after the test, ect. The doctor who tested my mother seemed very concerned about my history because growing up I had a problem with fainting and heart arithmias/murmurs/racing. Of course the doctors never determined what exactly my problem was but as I've gotten older it either has subsided or I've just learned what the signs are before I get to fainting stage. My second concern is if I am diagnosed what sort of precautions should I be taking? I am concerned I will not be able to excersize at the level I'm accustomed to at the gym or that I won't be able to go rock climbing. I just don't know how seriouse I'll have to watch my activity. Honestly I'm a little scared and hope I can get some real information.

    Thank you,



    [Re: Mother just diagnosed]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 12-16-02 09:08

    Dear Nicole,

    Please read the info about HCM on the rest of this site. You should also call the office at 973-983-7429 and talk to Lisa about becoming a member and doctors, etc. There are some military people here, so they should weigh in with tips for you.

    You need an electrocardiogram (ECG/EKG) and an echocardiogram (echo). You should ask for copies of both tests. You want a normal ecg and you want your septal wall to be less than 1 cm (or 10mm) thick. I won't list all the measurements here, but the septum and the left ventricle walls are the key ones to note.

    There is a possiblity you may want to slow down. If you have fainting in your history, that is a red flag and you should also see if you can get a stress test b/c if your blood pressure doesn't do what it is supposed to do, then you really need to back down on the exercise. Also, those two, as well as a few other things, are risk factors that would put you under consideration for an automatic implantable cardioverter-defibrillator (AICD or ICD). You can use the Search function here to look up the ICD risk factors.

    It is normal to be scared ---it is scary; but we are all here for you and will do whatever we can to help your family through this.



    [Re: Mother just diagnosed]

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

    Date: 12-16-02 20:06


    My husband is active duty Air Force and has HCM. I would be happy to talk to you about his experience, where we were when diagnosed and the saga that ensued. You didn't say that you are active duty, so I'll assume you are not. I know that military docs get a bad rap, but we've had some good encounters with them for the most part. Like all physicians, you will get good and bad with the military. Like I said, let me know if I can be of help.



    [Re: Mother just diagnosed]

    Author: Amanda (---.dsl.dytnoh.ameritech.net)

    Date: 12-18-02 13:48


    I was diagnosed when my husband was in the military(air force) but they knew about my hcm for a year without telling me they waited til i started having problems and became pregnant. i finally ran into a doctor who knew what he was doing thankfully so now i know. we are no longer military so the doctors i have seen thru most of this are civilian. hope this helps.



    [Re: Mother just diagnosed]

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

    Date: 12-19-02 07:19

    The ladies above have given good advise - -if you need any further information please call the HCMA Office.

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