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Anna's 6 month check-up

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Alison Whybro Find out more about Alison Whybro
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  • Anna's 6 month check-up

    Hi everyone,

    My 10 yr old daughter Anna has just been for her first full check-up (including echo) since her mitral valve repair last September.

    Amongst other things, the echo showed a peak gradient of 57mmHg and mean of 29mmHg with peak left ventricular outflow tract velocity of 3.8m/sec
    There was also moderate mitral regurgitatiojn with moderate LVOT obstruction due to severe systolic anterior motion of the mitral valve.

    I sort of have an understanding of what all this means but I sometimes feel as if I have no idea whether things are great, okay, bad or getting really bad. Are these stats normal for after a valve repair?

    Our cardiologist has increased Anna's verapamil and wants to do a holter test and another echo in five months time. I get the impression that he was more concerned than what he was letting on and now I am worrying....

    I thought I would get your thoughts before emailing the cardiologist as I don't want him to think I am a neurotic mother! Anna is keeping fairly well but gets a lot of migraines and her exercise tolerance is limited.

    On another note - I was pleased to hear that Krista's check-up went well.
    I always appreciate the updates on your lovely children.

    Kind regards,

    Alison Whybro
    Auckland, NZ

  • #2
    Re: Anna's 6 month check-up

    I'm sorry that Anna doesn't seem to be feeling so well lately. My 11 year old son gets migraines too and they're horrible. I think your doctor is a little concerned when looking at her gradient. The medication adjustment may help lower it, but there may need to be intervention if not. That coupled with the lower tolerance for exercise means she could be symptomatic enough for a myectomy in the future. Please keep us posted.

    Reenie
    Reenie

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

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    • #3
      Re: Anna's 6 month check-up

      I agree with Reenie's response. Your daugher is right on the edge of the place where they would start to consider a myectomy. If her gradient gets worse, or she feels worse, they might recommend another surgery to remove some of the thickening, and to perhaps tinker with the valve.

      I had a straight myectomy, and not a valve repair, so I can't speak specifically to that, but after a myectomy, they aim for a gradient of 0. Mine which used to be over 100mmHG is now 8mmHG resting. Hers is a bit higher than that, although it is not really high, just somewhat.
      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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      • #4
        Re: Anna's 6 month check-up

        Hi Reenie & Cynthia,

        Thanks for your replies, I appreciate the advice. I forgot to mention that when they repaired Anna's valve they also did a septal myectomy.

        It will be interesting to see if the increased medication helps improve things.

        I am wondering now if they will suggest replacing the valve as they did warn us that even with the repair, this might happen.

        I guess we will just have to wait and see how things go over the next five months before her next check-up.

        It's so hard sometimes living with the unpredictable nature of this disease. I sometimes feel as if I want to wrap Anna up in cotton wool and not let her do anything but I know you can't let your children live like that. I always feel like this after we've been for the check-ups but then life goes on and you learn to continue dealing with it.

        I am just very thankful for this board and the support and prayers of the lovely people on it.

        Alison
        Auckland, NZ

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        • #5
          Re: Anna's 6 month check-up

          In my opinion, there's no such thing as a neurotic mother. I wish I had been more neurotic. Keep on it.
          Linda G
          Son died of cardiac shock second to HCM at age 36.
          Live Well...Laugh Often...Love Much

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