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Latest on my HCM re sports

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rob drent Find out more about rob drent
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  • Latest on my HCM re sports

    My cardiologist thinks I have a "benign" form of HCM. Is there such a thing? Anyway the medicos seem to think I am an interesting case as I'm still playing competitive sports with a heart condition. In the age of user pays health care they are offering me FREE scans and monitoring (during a competitive squash game) before giving me a final diagnosis.
    My sister has also now tested positive with HCM and is undergoing the full tests.

  • #2
    Re: Latest on my HCM re sports

    I'm not sure about the "benign" part. That doesn't really make logical sense. I think I would be concerned. Talk to Lisa--she can help--look for information. This doesn't sound right to me.
    Roxann

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    • #3
      Re: Latest on my HCM re sports

      To my knowledge there isn't such a thing as "benign" HCM. It is or it isn't. Since your sister has it too, then I would say it is and you don't just have athlete's heart where the heart gets enlarged from extreme use. HCM is a very individual disease. There are some cases of HCM that are more symptomatic than others, but just because you've done so well so far doesn't mean you can't have something bad happen tomorrow. It sounds to me that your doctor may not know a lot about HCM and is using you as somewhat of a guinea pig to see what happens to the HCM heart when it is used aggressively. Remember, I am not a medical professional. I'm just telling you what I think of your doctor's attitude about your case and your care. I suggest you call Lisa at 973-983-7429 to see about seeing a specialist and then you can see if he concurs with your current doctor's assessment of your HCM.

      Reenie
      Reenie

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

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      • #4
        Re: Latest on my HCM re sports

        The only thing I can imagine is that your doctor thinks that non-obstructed HCM is "benign." However, this is not how HCM works. The risk factors for sudden death (his definition of "malignant," perhaps?) are a septal wall over 3 cm thick, a history of fainting, cardiac arrest, ventricular tachycardia, and a family history of sudden death.

        It is hard to have a septal wall that thick without obstruction, but I think it has happened.

        Please see a specialist without delay. This guy may be well-meaning, but he is clearly not on the ball.

        take care,

        S

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        • #5
          Re: Latest on my HCM re sports

          whoops ---forgot a factor: incorrect blood pressure response to a stress test.

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          • #6
            Re: Latest on my HCM re sports

            Lets put it this way... having HCM is like being a little bit pregnant. You are or you are not. There is no "benign" HCM. You may not be at high risk for sudden death...but that does not mean the the activities you are involved in are good for your heart now or in the future.
            I think a visit to a specialist is a good idea. No disrespect to your home town doctor - but HCM is not commonly seen in the community setting and therefore how much exp. does he/she have with HCM?
            I will be in the office on Tuesday if you want to talk.
            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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