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At what point will my heart stop?

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Patrick Von Mende Find out more about Patrick Von Mende
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  • At what point will my heart stop?


    Attached is some basic data that I've gathered (never mind wasn't allowed to post an attachment). I've been in the severe hypertrophy range since between 2015 and 2017. The next time I go in for a measurement will be in about 4-6 months. Given the rate of growth in the thickness of my inter-ventricular septum (currently 21mm) and posterior left ventricle wall (currently 19mm); will this growth plateau, or will it just continue to thicken? I'm guessing that if it continues to thicken, I'll be lucky to survive to be forty years old.

  • #2
    Hello Patrick, I see that you live in Minnesota. Are you being followed by the HCM Specialty clinic at Mayo, Rochester? If not, it would be a good idea to go there and get an in depth assessment of your condition for many reasons. In general, HCM heart muscle does not just keep getting thicker and thicker and then your heart stops. The whole reason to even have a diagnosis is to apply the best medical and surgical interventions at each stage of the disease for maximum longevity and quality of life. By going to a center of Excellence , like Mayo, you can. Ask all your questions, learn about your disease and prognosis and work together on a plan with your cardiologist for a full life. Your question hints to me that you really don't have a full grasp of your condition ..... which can lead to a lot of fear and conjecture. You might benefit by reading the book on HCM offered on this website and calling the HCMA office to discuss your concerns. Right now your septum and wall measurements are not outrageous....also, medical treatment is based on your symptoms more so than numbers on an echo. ...... Knowledge is Power! You are young, and the more you understand your own body, the better your future can be.
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

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    • #3
      Jill has given you solid advice.

      I'll add another thing, as someone who uses statistics a lot professionally. Never, ever, ever extrapolate from data outside the range measured. Ever. And especially don't do it linearly. As a really obvious bad example, imagine that if I projected my current height (I'm 65) based on my growth rate between ages 13-15. I'd be, well, really, really, really tall, right? OK, in that case, we *know* (and I knew at 13) that my growth wouldn't continue after age 17 or 18 or so. But even if we hadn't known it, it's just logically wrong to assume that something like that will continue undisturbed.

      So put your feet up, relax, and tomorrow make a call to Mayo, or any one of the recognized centers of excellence for HCM.

      Gordon
      Myectomy on Feb. 5, 2007.

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