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Don't know which way to turn!!!!


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  • Don't know which way to turn!!!!

    [Don't know which way to turn!!!!]

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

    Date: 06-04-02 12:47

    Hi everyone,

    I need to hear from people that have HCM without obstrution and still have a lot of symptons. Also a lot of fluid build up.

    I just talked to the doctor in Baltimore that I have been seeing as a second oponion. He said I don't have any obstrution and all they can do is increase my Toprol XL to 150 from 100. He doesn't know why I retain fluid some days more then other and have such a problem with shortness of breath. He said because I don't have an obstruction they can not do surgury. But that I do have a thicken muscle. He also said there was no need to do more testing or a catherization. I just don't know what to do anymore. I did call the office and left a message for them to get back with me so I can talk to somebody.

    Dora J


    [Re: Don't know which way to turn!!!!]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-04-02 13:48

    Dear Dora

    I don't have any obstruction and I go in and out of atrial fibrillation all the time, which is a pretty big symptom.

    The surgery he is talking about is a myectomy and it is used to remove any obstruction that blocks the mitral valve.

    However, there are other medications and there are ablation procedures that help some people, but only an HCM specialist can tell you if you are a candidate for an ablation. Also, the stronger medications require you to stay in the hospital for a few days at first.

    So, your best bet is to just relax, as much as possible, and talk to the office about seeing an expert.

    take care,



    [Re: Don't know which way to turn!!!!]

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

    Date: 06-05-02 00:37

    Hi, Dora,

    I've also been told that my HCM is non-obstructive, but I am almost completely incapacitated by symptoms - shortness of breath, chest pains, palpitations, daily fainting, dizziness, exhaustion, insomnia from the breathing difficulty and the palpitations, and like you, unpredictable fluid retention. My doctor changed one of my medicines last week and added another, we'll see if it helps.

    It does get discouraging, since my doctors all seem to feel any of the more "curative" procedures would not be appropriate in my case.

    However, I try to look on the bright side. My ICD brought me out of a ventricular fibrillation a few months ago, so I have a new lease on life beyond what I would have had. My younger brother died from HCM 3 years ago (besides my father, an uncle, an aunt, and two cousins, all some years ago), so I am really very lucky that I'm still here.

    I'd be very interested in being in touch with someone whose situation is similar to mine.



    [Re: Don't know which way to turn!!!!]

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

    Date: 06-05-02 08:06

    Hi Sarah,

    Thanks for responding.

    I wish I was able to relax while waiting for some answers, but as I posted earlier social security cut mine and my sons benefits and took my medicate, as of the first of this month and there is no way we can make it on my husbands income alone, plus I have to be able to see the doctor and get my medication, so as of Saturday my husband moved out of the house and I want something done so I can go to work, so he can come back home. I had my hopes of ever being able to work again pretty much cut off. I am hoping to talk to Lisa today or tomorrow. I talked to her about 6 weeks ago, but there was so much we talked about and with being on Cardizem my memory is like notta.

    Dora J.


    [Re: Don't know which way to turn!!!!]

    Author: lisa (208.47.172.---)

    Date: 06-05-02 11:01


    I know you called the office yesterday, honestly I was too tired to work in the office after the meeting and golf outing, I hope you understand. I will try to reach you tonight.

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

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