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  • worried about HCM... help please

    [worried about HCM... help please]

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

    Date: 12-01-02 14:03

    i was just wondering... um... my boyfriend has HCM & he keeps telling me that everything is OK. i was just wondering if you could maybe clear a few things up for me on what HCM is exactly. i read through the site & am still a little confused. i know he's not telling me things about it b/c he doesn't want me to worry but not knowing makes me worry even more. i love him so much & just wanna know what he's going through. so could someone please help me out a little? it'd b much appreciated.

    thanx so much,

    Brianne

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

    [Re: worried about HCM... help please]

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

    Date: 12-01-02 14:27

    Brianne,

    First of all, take a deep breath. Then tell him exactly what you've just said here.

    HCM is hypertrophic cardiomyopathy. There are many degrees of the disease and if affects everyone differently. What it means is that the septum of his heart, the muscle that separates the right half from the left, is thicker than normal. It's a genetic condition and the reason the muscle is thick is the cells aren't nice and straight and side-by-side. Instead, they are somewhat jumbled up. I am enclosing a link from the Mayo Clinic on HCM. http://www.mayo.edu/cv/wwwpg_cv/hocm_cln/q-a.htm

    The jumbled cells can cause 2 problems: 1) The muscle is thickened, sometimes leading to obstruction, which is when the muscle gets in the way of the blood flow through the mitral valve. 2) The electrical conduction through the heart can be messed up causing arrhythmias, or irregular heart rates. Some of these are not a big deal, but some can be life-threatening. I don't say that to upset you, but it can happen.

    Many people who have HCM live as long as or longer than the average American. I don't want you to think of HCM as a death sentence. Do you know things like how thick his septum is, does he have any arrhythmia problems, has he been seen by an HCM specialist? You are always welcome to post here on this board, whether it's asking for info, support, or just to get something off your chest. This a wonderful place with lots of people who know just what you're going through.

    I hope I have answered some of your questions. I hope you have a great holiday.

    Reenie

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

    [Re: worried about HCM... help please]

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

    Date: 12-01-02 16:54

    Dear Brianne,

    You need to tell your bf what you just told us---that not knowing just makes it worse. You don't mention what it is you are confused about, so I can't clear anything specifically up for you.

    The thing to understand is that everyone has a different experience with HCM. Some people are fine with some medication and taking good care of themselves and others need more intervention. It all depends.

    If bf has medication, does he take it? Does he see his doctor every 6-12 months and get echos every few years? Does he see a specialist (this is something that he should really, really do b/c most local doctors are just not informed and don't treat HCM according to the latest findings but with old, outdated info). If so, then I wouldn't worry, he is taking care of himself and that is all you can ask of anyone.

    Please feel free to e-mail me.

    S

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

    [Re: worried about HCM... help please]

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

    Date: 12-04-02 05:15

    Hi..

    If you would email us your name and mailing address...I would be more than happy to send you out an information packet that may help you.

    Good Luck

    Ellen

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

    [Re: worried about HCM... help please]

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

    Date: 12-06-02 17:34

    thank you all so much! i'm really greatful that u replied. i truely appreciate everything you've done. ---- especially you Reenie! : o)

    thanks again!

    luv always,

    Brianne

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

    [Cleveland Clinic visit]

    Author: Beckie from Ohio (---.210.230.154.Dial1.Cincinnati1.Level3.net)

    Date: 12-08-02 02:26

    Hello to all, I am going to Cleveland Clinic Dec. 11 and am wondering what to expect. Has anyone stayed at the Guest House? I am trying to get as close to the heart center as possilble and according to the map the Guest House is it. I have an appointment with Dr. Lever . What sort of tests should I expect? I have or so I have been told, cardiomyopathy. I really don't know what is wrong but I have been very sick all summer. I have been to 2 different cardiologist's locally and have gotten 2 different reports so I decided to go to Cleveland. If I don't have HCM does Dr. Lever treat other heart dieases? Also I was wondering if I should bring to the doctors attention my problem with bladder infections, 6 this year and awful stomach bloating. I don't think these are heart related so I don't know if I should mention them or not. Any input to my questions would be greatly appreciated. Thanks so much for the forum and your response, Beckie from Ohio
    NOTE: This is a post from the previous forum message board.

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