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My daughter had her first hcm screening.

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Angelawoods I was diagnosed in 2003, got my icd in 2003 Find out more about Angelawoods
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  • My daughter had her first hcm screening.

    My 14 year old daughter was just screened at lucille packard childrens hostpital in palo alto, Ca. Her echo and ekg was normal. She has had symptoms such as dizziness and chest pain. The doctor told me that even though her heart was not showing thickness. She could still have it. Screening all my children once a year was highly recommended. I know what I have been through and I am so scared for them. I was expecting an automatic "she's clear" and not have to worry that she may develop this in her future. That go's for all my children. I am very fortunate that so far I am the only one confirmed to have hcm. I just thought I would feel better that her echo and ekg was normal. She had her stress test yesterday and just turned her holter monitor in. Just waiting to hear that all is well in that area. Next is my 6 year old next month. I did learn something from the doctor. Its not the size of your heart that determines how sick your heart is. It was explained to me that the thickening is a symptom of this disease. Correct me if I'm wrong. Boy I've been here for a year and feel like I don't really know anymore than I did a year ago.

  • #2
    Angela,

    Sorry to hear you are going through all this stress and worry. Believe me many of us know how you feel. Our kids are our treasures. The good thing is presently your daughter is free of HCM . Encouage her to live as normal a life as possible. I have a 25 year old who has watched me go through this and worries a lot , she tends to go the doctor a lot and always descibes symptoms like HCM. The doctor assures her she is well and her echos ARE normal too. I think our children have it tough cause they always think, will I get this too?

    You are correct , our hearts are thick not necessarily big.

    Keep a positive thought and keep us posted. We are all here for you.

    Pam
    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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    • #3
      Hi Angela. You're very lucky that you have a doctor who seems to know something about HCM. He's right about having the children screened annually and also about thickness of the septum. Symptoms and factors such as stiffness of the ventricles, arrhthymias, and obstructions play a large part in determining how sick the heart is. I'm glad to hear that your daughter is clear for now. I'll pray she continues to remain clear. In the meantime, I'm sure you're happy that you have a year before she has to go through testing again.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

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      • #4
        Thank you Pam and Reenie, for your responses. Pam I am still doing the Voc rehab. I go to school 3 days a week. I go for about 3 hours a day. It really depends on how I feel. I still don't understand I can feel good for a while and think I'm on the mend and just be slammed all of the sudden with chest pains. I had lost my license due to syncope. (my new word) but I havn't had a episode in a long while so I may be getting it back. I don't and havn't passed out for a long time. I'm really looking forward to getting it back. Jumping all the hoops for dmv can be a pain!

        I don't know if this is where I need to ask this but I understand your annual Hcm meeting is in June. Is there any kind of support here on the west coast like that. It seems everyone is on the other side from me. I have been looking at plane fares. I don't think this year will be good. I just would really like to meet someone with hcm in person and just talk. It gets lonely here I plan maybe next year. I 'll pray and see what happens. I hope all is well with you all.

        God Bless,
        Angela

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        • #5
          Hi Angela,

          I am down here in So. Cal. There are others of us out this way as well. Maybe sometime there will be a heart meeting of one kind or another out here. There was something in San Fran last year, but I couldn't go.

          I am actually going to fly across the country to N.J. this year though I think. I bought my ticket today!
          Daughter of Father with HCM
          Diagnosed with HCM 1999.
          Full term pregnancy - Son born 11/01
          ICD implanted 2/03; generator replaced 2/2005 and 2/2012
          Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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          • #6
            Hi Angela,
            I’m out here in the outskirts of Las Vegas, and would love to go to the annual meetings each and every year, but to tell you the truth I do not feel isolated in the least. We are a tight group here who bend over backwards to suport our members, their families and friends. I have people on this board that I consider close friends, and they live all over the country and world.

            As far as information goes – when you join the association you will get a book co-authored by Lisa and a leading medical authority on HCM. You also have access to tons of information detailed at the front door to this site, and also in all the many postings contained here. If you still have unanswered questions you are free to post your own messages and seek specific information for your needs. You can contact people who have already been through what you now face, and who will be happy to help you deal with your situation(s), and finally, you can always contact Lisa and get specific, detailed personal guidance and support.

            This forum can also be used as a place to vent your frustrations and know you will have a friendly and understanding ear in which to let it all go. In this wonderful world of hyperspace you can have it all, and it doesn’t matter if the other person is half way down the block or half way around the world. A friend is still a friend.

            I am discouraged by your saying you know no more now then you did a year ago. Please, please use the tools at your disposal to find out all you can. As Lisa says, Knowledge is Power.
            Burt

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            • #7
              thank you Burton. How do I get that book you are talking about? I thought I had joined. I'm not here a whole lot but I really want to be a member. I probably should call Lisa Huh?

              Its nice to know I can vent somewhere. My family is a little tired of my venting

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              • #8
                I just took the time to read a little. I figured out how to be a member. I don't always pay attention. thanks again Burton

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                • #9
                  Hey--
                  I'm not a parent, so i dont know what its like to see your kids go through that, but i do know what its like to be really young and have this disease. i was diagnosed when i was 16 after YEARS of trying to figure out why i felt the way i did. finding out about HCM was almost a relief, just to know why i had the chest pains, etc. Both you & your daughter need to know that if she is diagnosed you have people here to help you through, and you guys gotta know that she can still be young, be herself, and have fun. If she ever wants to talk to me and she has AIM my screen name is supernelly87

                  much love & God bless
                  ~janelle*
                  \"The heart swells at the magnificance\"

                  1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

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