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  • a friend

    [a friend]

    Author: David Brewer (---.robinsons-intl.com)

    Date: 07-18-02 09:27

    My best mate has just been told he has HCM, he's 28. For most of his life he has worked as a doorman/security. Now he just sits in a chair at home.

    I see the fear in his face. Hes scared. Nothing I say...

    He used to cry, but drugs from the doctor have helped stop this.

    Is that good?

    He tells me that the doctors want to do a Alchol Septal ablation.

    What are his chances?

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

    [Re: a friend]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 07-18-02 09:39

    David,

    This is tough. I am probably going for the ablation myself. I know for me when I decided to get a second opinion at a specialty center it made me feel better. At least I will know that I have done everything possible before jumping into something. As for the abalation it has an excellent success rate for helping. HCM cannot be cured, but the ablation can remove the obstruction which lowers or eliminated the conditions. The success rate is I believe 80 - 90%.

    Try to get your friend to call Lisa at the HCMA here. She is a wonderful source of information, and helped me understand the issues.

    Jerry

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    [Re: a friend]

    Author: Lisa Salberg (208.47.172.---)

    Date: 07-18-02 12:50

    David and Jerry,

    A few items...first Jerry - regarding ablation - only 25% of people with HCM have obstruction and only a percentage of them need treatment in the form of ablation or surgery. Neither procedure "lower or eliminate" the condition, they can however lower symptoms associated with obstruction. Both procedures have very good outcomes when done in an experienced center (and there are very few).

    David - be there for your friend and make sure he knows he is not alone and HCM is not a death sentence by any means. He can have improved quality of life in many cases... IF he seeks out care from a specialist. HCM is rare and with all due respect to local cardiologist, they just do not see enough to be able to understand the complete disease.

    Let him know we are here if he needs us.

    Best wishes to all,

    Lisa Salberg

    President

    HCMA

    973-983-7429

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

    [Re: a friend]

    Author: Board Moderator (Sarah Beckley (---.tnt37.chi5.da.uu.net)

    Date: 07-18-02 14:37

    Dear David

    Please give your friend the HCMA phone number and make sure he calls. Many doctors are unfamiliar with HCM and it sounds like from what you describe that his doctor has painted a grim picture. The stats on sudden death have been greatly overstated and is in reality almost infentesimal --not much more than you have of getting hit by a bus --just to put it in perspective. Only about 1% of the entire HCM patient population dies suddenly each year.

    The VAST majority of people with HCM live a full life and make it to the average life expectancy. It is normal, however, to get very depressed when diagnosed with a serious heart condition. Your friend really needs to be reading this board and talking to Lisa and getting the name of a real HCM specialist so he can get the skinny on his condition.

    It sounds like he was put on an anti-depressant, but what about his heart? There are lots of medications that make a huge difference in quality of life. I know it is hard to go from being "healthy" to taking medicine every day, but it is possible to make the transition and still have a good life with physical activity.

    hang in there --he will be angry and in denial too, just stand by him.

    Sarah

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

    [Re: a friend]

    Author: Dawn (---.cl.ri.cox.net)

    Date: 07-18-02 20:48

    Hi,

    My mom was dx in April w/HCM and was told last week she needs a septal myectomy.

    "It is normal to get very depressed when diagnosed...."

    My mom had a mental break down this week. We (family) were close to admitting her to a psy unit! It started Monday night and we called her doc who was doing her cath in the morning. "She'll be fine." He didn't believe how out on the edge she was. Luckily I know how much Xanax to safely give her. She made it to her cath but during recovery....it took 5-6 people to hold her down. It was a big ugly scene. But now the doc's understand us when we tell them she is not coping well.

    Now all her doc's have been there in a heartbeat to help when she's really freaking out. Three and a half days of ****, we think her meds have her 'under control.' But it will be a long time before she'll have her myectomy done. First she needs to deal with her hate/phobia of doc and accepting her diagnosis.

    Life has been tough this week, I'm so thankful for this web site and knowing we're not alone.

    Dawn

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

    [Re: a friend]

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

    Date: 07-18-02 21:11

    Dawn,

    Sorry to hear about your mother having to be admitted to a psy ward. I had a nerves breakdown when I was 25 and again when I was 31. I had been dealing with depression long before I found out I have HCM. In fact it was soon after I had my second break down and was going to therapy and one of the things I was doing was going to the gym one day a week. While at the gym and walking on the stair steps I started getting tightness in my chest and was sent to a card. That is when they did a echo and found it. At that time my doctors didn't tell me a whole lot and I was already dealing with the depression so I really didn't go through the stages the you normally go through, but now after 8 years I am going through it because I want to be able to work and can't and SSI took my medicate and both mine and my sons check away. He was making a little more then $2400 a month. There was no way we could make it on just his income so it was better for him to go live with his niece so I could get my check back. I am really struggling to make ends meet on my income. I can't win for losing. Well enough complaining.

    PS. "He" is my husband, I messed up and the board won't let me correct it.

    The best thing to do with the depression is to be there for her, and if possible don't leave her alone longer then you have too. Being alone gives you to much time to think about things that you don't want to think about.

    Dora

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

    [Re: a friend]

    Author: Board Moderator (Sarah Beckley (---.tnt4.chiega.da.uu.net)

    Date: 07-18-02 23:04

    Dear Dawn,

    Have you had your mom talk to Lisa? She is a great comfort to all of us and would probably do your mom a lot of good. 973-983-7429.

    i wish you all the best,

    Sarah

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

    [Re: a friend]

    Author: Dawn (---.cl.ri.cox.net)

    Date: 07-19-02 13:24

    Dora,

    Sounds like you've had a rough road at times but still keeping a positive attitude. Thanks for the advice about not leaving mom alone. For the most part we've done that. I guess I wasn't very clear, we did NOT have to admit her,but it was close.

    Sarah,

    At this point in time we're letting mom 'ignore' the fact that she has hcm. Denial at times is good as long as it doesn't go on too long. Maybe in the near future I'll sit with her and have her look at the message board. Later, I'll let her decide about calling Lisa. For now she's doing ok and has lots of support from her family. Like so many things, we'll take it one day at a time.

    Thank you for your continuing support.

    Dawn

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

    [Re: a friend]

    Author: Lisa Salberg (208.47.172.---)

    Date: 07-19-02 14:50

    Dawn - It sounds like your mom is lucky to have such a supportive daughter! While I agree that she needs to deal with 1 thing at a time, if she needs intervention (myectomy or other) it may serve her well to take care of it sooner than later- - as it may make the "whole" self feel better and therefore get her heart and her heart on the path to the future.

    Always know we are all here for you both!

    Lisa

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

    [Re: a friend]

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

    Date: 07-19-02 19:03

    oops I ment to say heart and mind ... sorry

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

    [Re: a friend]

    Author: Dawn (---.cl.ri.cox.net)

    Date: 07-19-02 22:21

    It's ok, I knew what you ment!
    NOTE: This is a post from the previous forum message board.

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