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  • uninformed

    [uninformed]

    Author: Toni Thames (---.proxy.aol.com)

    Date: 04-12-02 19:03

    Hello my name is Toni Thames. I am 33 married and the mother of three children ages 12,8,and 5. I was diagnosed in 1993 with hypertrophic cardiomyopathy. At this time I asked if my children were in danger of having this and I was told no. I have also taken my children doctors appointments and told them of my condition in the medial histories and no one has ever said anything about having my children checked. I am now on toprol xl 100mg,lasix 40 mg,and potassium chl 10 meq. I went in congestive heart failure 3 weeks ago and had a four day hospital stay. Needless to say it wasn't a pleasant experience.I am sick to my stomach to think that my children could possibly have this also. Should I call and have them checked now even though they don't show any symtoms? I am so glad that I have found this sight. It's a relief to read others problems that I am too going through and to recieve information that it very informative. I took am bothered by the excessive heartbeat. At night when I lay still on my left I actually feel my upper body go up and down to the beat of my heart. It's just good to see that other people actually experience the same things and I am not all alone and it's not just in my head. I alskno want to ow if anyone has feelings of fatigue all of the time.

    Thanks

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    [Re: uninformed]

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

    Date: 04-12-02 20:26

    Dear Toni

    Welcome to the board.

    I'm 33, too, but just divorced, no kids.

    Your situation is a prime example of why it is so important to find an HCM specialist. Your children each have a 50/50 chance of having HCM and they should get echos every few years to check for hypertrophy. Even without any symptoms.

    What about your parent's and siblings? It is unusual to be the only one in a family with HCM, although it does happen.

    Please call the HCMA at 973-983-7429 to get the name of an HCMA specialist near you so that you and your kids can be properly cared for. I'm not saying your doctor is bad, just that they may not see enough of HCM to know the latest treatment options and so on.

    take care and I hope you are feeling better from your hospital stay.

    Sarah

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    [Re: uninformed]

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

    Date: 04-12-02 20:29

    Dear Toni

    I forgot --I only feel tired all the time if I'm in atrial fibrillation. Are you staying in rhythm? Have you talked to your doctor about your fatigue? Is your iron ok? The beta-blockers can make you a little tired, too, you may want to ask about adjusting the dose.

    S

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    [Re: uninformed]

    Author: vickie (---.se.client2.attbi.com)

    Date: 04-12-02 22:58

    Dear Toni,

    I am on Atenolol 100 mg and norpace 600 mg. I am extremely tired most of the time. It has gotten worse lately to the point that by 9:30 in the morning I'm ready for a nap! I was at my cardiologist's office today and mentioned it to her. She thinks it could be the Atenolol (beta blocker). It could also be the HOCM itself or she said it could be depression due to the Atenolol or due to the diagnosis. I don't really feel depressed- more like frustrated- because I can't do the things I want anymore, but I did agree to try an antidepressant, Celexa, for a month to see if it does any good. She is reluctant to change my meds because my pain is so much less now and because I had a reduction in gradient and ventricular septal thickness on my last echo on these meds.I also have children ages 8, 10, and 13. They were all screened last September and 2 of them will be re-screened this September because of abnormal EKGs and 1 with a borderline echo. The oldest child screened clear. All are into competitive sports and are asymptomatic and have not been restricted as yet except for the one who had the borderline echo. The ped. cardiologist told him no weight lifting. I watch them carefully. Take care of yourself and those little kiddies.

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    [Re: uninformed]

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

    Date: 04-13-02 06:59

    Toni,

    first I want to reply to Vicki - ALL your children need to be retested-Just because one was clear at age 12-13 means nothing, they need to be followed by screening at least annually through puberty then ever few years thereafter.

    Now Toni -

    I to am 30 something mom, with HCM and a child. Fatugue is a normal part of HCM and may in some cases be related to medications.

    Again I will give the advise I so often give on this message board SEE an HCM specialist to fully evaluate your condition. Call the office we can chat more then.

    Regards,

    Lisa Salberg

    President

    HCMA

    973-983-7429

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    [Re: uninformed]

    Author: Toni Thames (---.proxy.aol.com)

    Date: 04-13-02 08:30

    Thanks for all the good advice I am so glad I have found this site. Yes I have talked to my doctor about the fatigue and he changed my medication from atenelol 100 mg to the toprol xl 100mg. When I took a lower dosage of atenelol 50mg that did not help with my symptoms so i was taken to 100mg. It did suppress the symptoms that I was having but it also as you stated adds to the fatigue. I actually told my cardiologist yesterday before I found this site how tired I have been and he stated that I needed to stay on this dosage and I needed to add exercise into my routine.That's easier said then done with my everyday routine.I live in the Charlotte North Carolina area and would be grateful to know of some specialist in the area. Thanks

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

    [Re: uninformed]

    Author: Toni Thames (---.proxy.aol.com)

    Date: 04-13-02 08:30

    Thanks for all the good advice I am so glad I have found this site. Yes I have talked to my doctor about the fatigue and he changed my medication from atenelol 100 mg to the toprol xl 100mg. When I took a lower dosage of atenelol 50mg that did not help with my symptoms so i was taken to 100mg. It did suppress the symptoms that I was having but it also as you stated adds to the fatigue. I actually told my cardiologist yesterday before I found this site how tired I have been and he stated that I needed to stay on this dosage and I needed to add exercise into my routine.That's easier said then done with my everyday routine.I live in the Charlotte North Carolina area and would be grateful to know of some specialist in the area. Thanks

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

    [Re: uninformed]

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

    Date: 04-13-02 23:15

    Hi Toni,

    I too, like the others have Hypertrophic Cardiomyopathy. I was diognoised in 1994. At the time I lived in MN. My doctor sent me to the Mayo clinic in MN.

    They did a catheter and tryed putting a temperary pacemaker in. At the time they said I didn't have enough of a change that they would put a permenemt one in. I have been on meds. since. At the present I am taking Toprol XL, Cardizem XT and Laxic's and potassium for my fluid. In 1996 I moved to DE and had been see a cardiologist. After seeing him for several years I found out I am his only patient. I had been asking him if there wasn't something he could do so I can be a more active person. But he kept telling me it was to dangerous. I finally talked him in to letting me go to Cardio thyerpy. About the third time I went I started having tightness in my chest and shortness of breath, (they had uped my work load)so they called my doctor and he said I was not allow to go anymore. Boy was I upset. I told the technicions that if they would keep my work load lower I would still be able to do it. They agreed. Well that was enough to make me look for another doctor. When I went to see her, she said that was the best thing I could do as long as I kept it to where it wasn't bothering me to much, that as long as I walked, even though I was not able to walk as fast as other people I was still going through the motions and that would help. I finish my two month thyerpy and am now go to a gym five days a week. I walk for an hour and am also going on the bike for 15 to 20 minutes. Every other day I do weights and a few other thing. No not near as much as other people but I sure feel a lot better doing this. My main reason for doing all of this is to lose some weight. My doctor is sending me to some specialist in Baltimore. I am hoping to have one of the procedures done and being able to again do things a normal 40 year old can do. I to just found this sight and it sure is nice to have other people that are going through the same thing and knowing I am not the only one. I am not even able to do my own house work anymore. I can do things that are up to my waist and higher, but if I have to bend down to do something I feel like I can't breath and somebody is choking me.

    Well I have babbled on and I think I need to stop. I am alway happy to hear from people that go through the same thing.

    Oh yes I almost forgot I have three boys, 17,13, and 11. They have all been tested and I try to have them tested at least every two to three years. So far they have not showed any signs. But it is always possible.
    NOTE: This is a post from the previous forum message board.

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