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lisa g Find out more about lisa g
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  • pregnant and nervous

    Hi everyone! I have just learned (or confirmed, actually) that I'm pregnant with my fourth child. I'm about eight weeks along. My youngest daughter, now 2 years old, was born with HCM. She's done great so far. The other children, ages 9 and 4 have no signs of it yet. Our family has really puzzled the Drs. because, although I had an uncle who had HCM, I show no signs of it, and neither do either of my parents.

    My OB has said he sees no reason to do anything differently as far as my care during this pregnancy is concerned, which makes me nervous. He said they'd look at the heart closely on the 20-week sonogram but recommends no other testing or special monitoring. He says he thinks the chances of this baby having HCM are very low.

    We'll be seeing my daughter's pediatric cardiologist next week, and I plan to ask him about it, but I was wondering if you all have any advice for me. Even though we've had no problems with my daughter's condition so far, I'm VERY anxious.

    Thanks!
    Lisa

  • #2
    Re: pregnant and nervous

    Good luck with #4. Hope all works out well for you!

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    • #3
      Re: pregnant and nervous

      Lisa, Congratulations and Best Wishes! I'm glad you will be seeing your ped cardiologist next wk. I'm sure you'll feel better after having included that expertise in your care. Hope all goes well with your daughter's checkup. Lisa is pretty busy this wk with her niece, but call/email her at the office, leave a message, and she will get back to you. She will be able to give you lots of info and suggestions as to questions you should ask and info you should seek. Linda

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      • #4
        Re: pregnant and nervous

        Good luck, Lisa.
        Reenie

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

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        • #5
          Re: pregnant and nervous

          From one Lisa to another,

          I think all pregnant women are nervous and adding the mix of HCM well that will add to the concerns we all have when expecting.
          I would follow up carefully with an adult cardiologist ONLY because you have an uncle with HCM and daughter... the chances that you are a gene carrier are VERY high. A visit to a specialty center would be a good idea. You have 4 kids who need you health... you can not be too careful.

          Be well,
          Lisa
          Knowledge is power ... Stay informed!
          YOU can make a difference - all you have to do is try!

          Dx age 12 current age 46 and counting!
          lost: 5 family members to HCM (SCD, Stroke, CHF)
          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
          Therapy - ICD (implanted 97, 01, 04 and 11, medication
          Currently not obstructed
          Complications - unnecessary pacemaker and stroke (unrelated to each other)

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          • #6
            Re: pregnant and nervous

            I agree with Lisa that you can never be to careful with a pregnancy with a family history of hcm. I wouldn't take any chances and take good care of yourself, Good luck to your growing family and your son.
            Jen

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            • #7
              Re: pregnant and nervous

              You will be in my prayers. Does anyone know how a doctor can determine if someone is a carrier? (of the HCM gene?). Also, if you have no evidence, can you still have the cellular disarray?

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              • #8
                Re: pregnant and nervous

                Hi. There are one or two labs that I know of that do genetic testing (via blood) to determine if someone has the mutation that causes HCM or not. These labs are research only at this point and are not used to predict whether or not someone will ever get HCM. You can ask your doctor if you're interested in being one of the families they type. There are several gene mutations that cause HCM and so far about 10 have been identified. Good luck.

                Reenie
                Reenie

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

                Comment


                • #9
                  Re: pregnant and nervous

                  I can understand how you feel.
                  I hope for the best for you and your family.

                  I think only after screening your family (doing blood tests) and undergoing a study in all your family it is possible to detect the gene (not all genes were detected yet) this study may take a long period of time.
                  Still - the medicine is advancing very fast a learning more about the different genes causing HCM/HOCM.
                  Then it is possible to perform a chorionic villus sampling, CVS test between weeks 9 - 11. the results will show if carrying the dominant gene.

                  I would love to share privately my experience.
                  Our family was screened and we know the name of the mutation.
                  Wishes for healh, peace and love!

                  Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
                  Haifa - Israel.

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