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Waiting on COE appointment, but what does all this mean?


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  • Waiting on COE appointment, but what does all this mean?

    Hi all! I was just diagnosed with HCM by a general cardiologist based on echo results. My cardiologist is referring me out to an HCM specialty clinic for an MRI, genetic testing, etc. Word has it it will take up to 3 months to get in with the specialty clinic. In the meantime I'm left with more questions than answers, and naturally a lot of anxiety.

    Here's what I know so far:
    --Borderline LV hypertrophy with basal intraventricular septum showing moderate thickening.
    --Hyperdynamic L ventricle with abnormal L ventricle filling consistent with impaired relaxation
    --Intracavitary gradient of 9 mmHg at rest, increasing to 35 mmHg with valsalva.
    ---Ejection fraction elevated at 80%

    From what I can gather, my gradient isn't all that bad. But the ejection fraction is concerning and speaks to diastolic dysfunction. I initially went to my PCP due to leg edema, chest pain, tachycardia and palpitations. I'm getting tachycardia and palpitations that last 3-5 hours after meals, and leg pain with exertion. I'm a bit short of breath at times, and maybe dizzy occasionally, but no syncope. Fatigue is really kicking my butt. Are my symptoms related to possible obstruction or more from the diastolic dysfunction? Does diastolic dysfunction usually occur with obstruction or is it common even with the gradient I have?

    From those of you here with lots of experience and knowledge of HCM, what sort of picture does all this paint?

    I havent received much info or any sort of prognosis from my cardiologist at this point. Just a referral, a prescription for metoprolol and instructions to avoid anything strenuous and to drink at least 2L of water a day.

  • #2
    Hello Drich, Getting an HCM diagnosis can be disconcerting....but know that all in all it is a pretty manageable condition. I recommend getting the book that is for sale on this website and possibly calling the HCMA office to get some perspective while you wait for your appointment with an HCM specialist. Diastolic disfunction and hyperdynamic EF and resulting symptomas can vary greatly throufghout the day. But will be lessened with proper medication. You mentioned tachycardia and palpitations after meals....this is very common with HCM.....Some hints to help with symptoms eat small meals and rest or do minimal walking type activity after meals. Also some people find that carbohydrates increase meal time symptoms and you may wan't to decrease the carbs ,especially refined carbs in your meals. Be sure to warm up before activity or exercise.... Burst activity... is not always handled well by the HCM heart. Stay hydrated.....a stiff heart works better with a full volume of fluid.
    I would say that leg pain is not a typical HCM symptom and with edema and chest pain I hope that you have also been worked up for coronary artery disease and peripheral vascular disease..... HCM may be contributing to symptoms but other factors might be involved also.
    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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