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pmurphy Find out more about pmurphy
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  • Back in school

    Caitlyn went to a partial day at school yesterday and, taa-daa, today started back to a full day. It has been 24 days since her myectomy in Boston and she is doing very, very well. She had a followup with her local pediatric cardiologist last week and he was thrilled with the results from her echo. She does have her 'low' moments, mostly right before bed time, but overall we could not have imagined her recovery going better.

    It has really been in our minds again of late just what a remarkable individual Lisa Salberg is, and the incredible juggernaut of education and support that the HCMA has become. In our 2 and 1/2 year journey since Caitlyn's diagnosis, I wonder how her life would be different without the HCMA. Early in her diagnosis her doctor here suggested dual pacing to try and cope with her high gradient. Based on what we'd read in the 'HCM Bible' (Lisa and Dr. Maron's book) and what we'd learned at our first HCMA meeting we nixed that idea and opted instead to vigorously try to lower the gradient with meds. That worked for more than a year. Then this past Fall when the gradient skyrocketed (and she was maxed out on meds) we were suggested to investigate an achohol ablation for her. Again, we knew from what we'd learned in the book, on this board, and in HCM conferences in NJ and MN that ablations are NOT recommended for young people (Caitlyn is 14). That's when, with her local PC's full support, we went to NEMC for an evaluation at their HCM clinic. None of this is meant as a slam at her local medical care; her PC is widely respected in our state and we think the world of him, but his experience with HCM in children, even in a major metropolitan area, was very limited. But it does emphasize what Lisa and people on this message board always tell newcomers: you MUST go to an HCM specialist.

    So forever and always, here's another big thanks to Lisa and all those involved with the HCMA. I don't know what we would have done without ya'!

    Paul

  • #2
    Re: Back in school

    Hi Paul,
    Everything you said in your post is absolutely true, and no small credit rests on your shoulders too. You are the one who did the necessary research and guidance to arrive at such a happy place. I salute you.
    Burt

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