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Recently diagnosed with HCM. What to do next?

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benjamintr Find out more about benjamintr
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  • Recently diagnosed with HCM. What to do next?

    I'm 35 and have had a heart murmur since birth. I was always told by doctors that there was no reason to worry, that I should live a normal live, and to get my heart checked out every 5 years.

    10 years ago I had an echocardiogram done as well as a stress echo and wore a holter monitor for 24 hours. I was told that I had an enlarged left ventricle, but that this didn't real mean anything other than to take good care of myself and stay well hydrated. The stress test and echo showed no other problems.

    5 years ago I had another echo done and was given the same advice.

    I recently changed health plans and had to see a different cardiologist for my next "5 year checkup". This new cardiologist diagnosed me with HCM and scheduled appointments for another stress echo, holter monitor, and meeting with a electrophysiologist.

    I'm unclear on what this new diagnosis means as opposed to the "you have an enlarged left ventricle" advice that was given to me by my old doctors. I have no symptoms of HCM in my day to day life.

    What determines whether I am at high risk for "sudden death" or suffer from a minor defect that probably won't have any impact on my life?

    I'm confused as to how best determine the seriousness of this new diagnosis.

    Any help is appreciated.

    thanks!

    -B

  • #2
    Hi and welcome to the HCMA. There are several things to look at when determining how much this diagnosis will affect you. You should ask your doctor for your echo reports and have them include the actual measurements with the reports. Your septal thickness is a number you should be aware of. Also, you need to know if you have a gradient, which indicates obstruction. I'll list the 5 major risk factors for sudden cardiac death. You might also give Lisa Salberg a call next week. She knows more about HCM than most people and she can help you determine what your next steps might be. Her phone number is 973-983-7429.

    Reenie
    • 1. history of sudden death in the family under age 50
      2. history of tachycardia or heart attack
      3. history of fainiting
      4. history of adverse blood pressure response to stress test
      5. septal measurement of >3 cm
    Reenie

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

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    • #3
      Hi Ben,
      Welcome to the site. There is a ton of information here for you – just check out the front of this site, or scan/search the postings, or post a request for specific information and somebody is sure to answer you, or call Lisa for detailed (specific) information or advice. (I’m sorry this sounds so abrupt, but while I was typing this I was talking to my medical insurance co, and trying to schedule appointments with some of our doctor’s and medical providers – things that are sure to get me PO’ed beyond belief.)

      Anyhow, as far back as I can remember (age 4) I was told that I had a heart murmur and an ‘athletic’ heart – but I was expected to grow out of it. As the years rolled by I began to have symptoms which were put down to a wide variety of causes, the most frequent of which were being out of shape, or panic attacks, or other such wild guesses.

      It wasn’t until my health forced me to retire early, and a few years later I had some HOCM episodes which had me thrown into the hospital - that I was finally correctly diagnosed. That was New Years Day 2004 – and I was seventy one years old. To be fair, I also have a closet full of other diagnosis which makes getting an accurate picture of my situation rather difficult. (I just picked up my 17th diagnosis.)

      To get back to you, it’s impossible to give you any kind of handle on your condition since we are all different – but I can give you a few hints to help you along the way. Namely, this disease is rather peculiar in that the symptoms you experience and the circumstances of you condition have almost no correlation with each other – except that the size of your septum is a marker for the chance of sudden cardiac death – but then there are precautions one can take to help dodge that bullet.

      I would suggest getting the details of your last echo – with the actual readings, and then calling Lisa and discussing it with her. You’ll be very glad you did. Her number is at the bottom of every page. Finally, let me again welcome you to the site. We are a tight knit group who watch out for each other as best we can. I hope you like it here.
      Burt

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      • #4
        thanks

        Thanks for the help! It's appreciated.

        My septum apparently ranges from 1 to 2 cm. So... not great but not horrendous either. My family has a history of murmurs, but no deaths as a result that I know about.

        -B

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