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  • my mom has hcma

    [my mom has hcma]

    Author: Sarah (---.eugn.uswest.net)

    Date: 07-27-02 16:30

    Hi, my mom has hcma and was diagnosed about 4 years ago. We don't talk about it a lot and to be quite honest every time I think about it, I get really upset... I am scared to death of losing my mom to this disease. She is in her late 40's. I read one of the sudden death posts and got quite worked up over it. What really is the chance that someone would die of this disease? How long do they usually live? My mom and I especially don't talk about this topic. Its just too hard on me. I want truth not just comfort. Thanks,

    Sarah

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    [Re: my mom has hcm]

    Author: Sarah (---.eugn.uswest.net)

    Date: 07-27-02 16:34

    I meant....HCM...not hcma

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    [Re: my mom has hcm]

    Author: Sarah (---.eugn.uswest.net)

    Date: 07-27-02 16:49

    ok, its me again. I thought of another question--does the heart muscle get thicker through the years with hcm? I saw something about "end stage" hcm on the boards. Is there such thing?

    Thanks,

    Sarah

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    [Re: my mom has hcm]

    Author: Sarah B-Board Moderator (---.ipt.aol.com)

    Date: 07-27-02 17:58

    Dear Sarah,

    About 1% of the HCM population dies suddenly. The risk factors for sudden death are a family history of sudden death, a personal history of heart attack, fainting, ventricular tachycardia, an adverse blood pressure response to a stress test or a septal wall measurement of 3 or more cm. Most doctors want you to have several risk factors before they install an implantable cardioverter-defibrillator (ICD). The ICD listens to the heart 24/7 and shocks it back to normal if any bad arrhythmias start, thus saving your life.

    So, the big questions are 1. Has your mom been evaluated for sudden death by an HCM specialist? and 2. Have you been screened for HCM (and your siblings, if any)? As you should be. Screening consists of an electrocardiogram (ECG), echocardiogram (echo), and visit with an electrophysiologist cardiologist.

    Please call the HCMA at 973-983-7429 if you need the name of an HCM specialist.

    And this is definitely something you should talk to your mom about. Please show her the web site as a starting point.

    take care

    Sarah

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    [Re: my mom has hcm]

    Author: Sarah B-Board Moderator (---.ipt.aol.com)

    Date: 07-27-02 18:02

    Oh, sorry, about "end stage" HCM ---sometimes people who have HCM for a very long time get "burnt out" or "end stage" which means that the heart has been overtaxed for so long that the walls actually begin to thin and the heart is too big and thin, almost floppy --which is just as bad as being too thick and hard to pump. You can't do any surgery for that, but get a new heart. This is pretty rare, too.

    For every sudden death post, there are ten "I am doing really well" if not more. So please look on the bright side. Most people live full life spans with HCM if they get the proper treatment and take care of themself.

    S

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    [Re: my mom has hcm]

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

    Date: 07-28-02 12:36

    Dear Sara's

    Hi to new Sara, do not panic for your mothers condition, most people with HCM live to or surpass the average age of mortality in the USA, which is 73 years! A good evaluation from a specialist in the condition can help determine if your mom is a at high risk if sudden death. Have you been screened? if not you need to be.

    As with any chronic condition it is important to talk about it - it will not just go away if nobody is talking about it. HOWEVER you life should not revolve around it either.

    A very good friend once told me "The fear of dieing is worse then dieing” I agree with him 100% (thanks Franco!)

    Talk to your mom, stop being afraid and LIVE your life! And know YOU and your mom are NOT alone!

    Best wishes,

    Lisa Salberg

    President

    HCMA

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    [Re: my mom has hcm]

    Author: Sarah (63.224.203.---)

    Date: 07-29-02 19:24

    Thanks everybody! You were all really helpful. Sorry, if I freaked-my mom just means a lot to me.

    Sarah

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    [Re: my mom has hcm]

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

    Date: 07-29-02 19:54

    Hey no problem I would worry if you were not a little freaked out in the begining, it happens to ALL of us.

    Best to ALL!

    Lisa

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    [Re: my mom has hcm]

    Author: Sarah 's Mom (---.dialup.mindspring.com)

    Date: 07-30-02 01:05

    Dear Sarah.

    Hi, this is mom! I didn't know you knew about this web site. I've been reading this web site for a couple of months so I'm way ahead of you. I know we haven't talked very much about this so it is rather odd we start on a web site but at least it will start the process. Thank you Sarah B.and Lisa for your help! I will be calling

    my daughter real soon. Sarah you are the best daughter ever and I LOVE YOU

    SO MUCH.

    Love, mom

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    [Re: my mom has hcm]

    Author: Sarah B-Board Moderator (---.ipt.aol.com)

    Date: 07-30-02 01:43

    Dear Sarah's mom,

    I'm so glad that you and Sarah are opening a dialog about your HCM. I know it isn't easy to talk about. My mom has HCM, but she doesn't read the site and she never told me anything about it but "don't tell your boyfriend" --afraid that he would not like me if I told him (which is silly, but mom is old school).

    This is such a "Dear Abbey" column ---she is always telling the person who wrote to show the letter to the person they have a concern with/about/etc as the conversation starter. So hurray for you!!

    all the best,

    Sarah

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    [Re: my mom has hcm]

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

    Date: 07-30-02 20:40

    Ok Ok I am in tears here! To Sara's mom that was the sweetest posting I have read in a long time! I am so happy the board opened this line of communication and hope you both find the support you need here and with each other.

    WOW... this is really amazing... the power of the internet

    All my best to mother and daughter!!

    Lisa

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    [Re: my mom has hcm]

    Author: karen (---.dyn.optonline.net)

    Date: 07-30-02 22:33

    You got me at.........Dear Sarah....Hi, it's mom!! I was immediately moved, instant chills!! That was too beautiful. Thanks, I really enjoyed that. I'm sure many people out there quietly read the board and gather info, but they don't chime in. And, there's nothing wrong with that. Jamie, if you're out there............i'll love you forever!

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    [Re: my mom has hcm]

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

    Date: 07-31-02 15:45

    Karen...cute pick up on the movie reference there...forgetting the name at the moment..Mcguire something right???

    Yes your right I get calls from my family all the time saying.. did you read this or that...It makes me laugh sometimes... My brother even posted once or twice...My sister is vocal from time to time...but mom and dad are simply readers! (HI GUYS)

    But again to Sara's mom... that was wonderful!!!!!!!!!!!

    Best to all!

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

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