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jimmycro Find out more about jimmycro
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    My cardiologist last week told me that I have HCM without obstruction. I have been undergoing tests for several months after passing out twice in October. I have been frantically searching for more information and it all seems very confusing. Some articles seem to be doomsday (sudden death) and others seem to downplay that aspect. I still have another test in 2 weeks (tilt-table) and then the cardiologist will probably prescribe a beta blocker. I feel comfortable with my cardiologist and have gotten a second opinion. I am a volunteer firefighter and worried about having to give that up. Any suggestions about where to get more info?
    I wish you enough.......

  • #2
    Here

    Dear Jimmy,

    Here is where you get more information. First, read the rest of this web site (which has a lot) and if you are interested in becoming a member, you can join from the membership link on the home page.

    The story on sudden death is this: it happens, but it actually only happens to 1-2% of HCMers each year. The stats have been over-reported for some years due to the fact that the actual pool of people with HCM was thought to be smaller than it actually is. Almost or about 1 in 500 people have it and the vast majority live long, full lives.

    That is the good news. The bad news is that fainting is not good. It is _one_ of the risk factors that will invite you to getting an implantable cardioverter-defibrillator (ICD). The others are a history of ventricular tachycardia and/or cardiac arrest, a septal wall over 3cm thick, a family history of sudden death, and an incorrect blood pressure response to a stress test.

    HCM is a very tricky disease and while your cardiologist sounds like he is going though the correct procedures, your fainting would have an HCM specialist not waiting to do your tests and evaluating you for an ICD in the process.

    I strongly recommend that you call the office (973-983-7429) and talk to Lisa about doctors --we don't just post names and numbers here --we talk to you and find out who best to recommend and give you contact info for whomever you choose as well as talk to them for you as need be.

    Please don't think that I'm saying you need an ICD or that you are going to die. I'm saying that you NEED to see a specialist and get the best opinion you can.

    It is very scary for all of us when we are first diagnosed, but hang in there and keep us posted. There are some great people here and the HCMA is here for you.

    take care,

    Sarah

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    • #3
      Jimmy,

      Just to clarify what an implante cardio-defibrillator (ICD) is: You ever watch ER and see them use the paddles to shock a patient when they are having a heart attack? Well, an ICD is the "paddles" that is contained in a small box. It's about the size of a Zippo lighter and is surgically implanted in your chest. It constantly monitors your heart and will shock you when it detects a heart rate that is beyond the parameters programmed by your doctor. I thought you might not know what one was and would want to know. Let us know if there are any more questions we can answer for you.

      Reenie
      Reenie

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

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      • #4
        Welcome to the club you never wanted to join .
        You will have to be a bit realistic with your work as a volunteer fire fighter (a group of people near and dear to my heart..dad and brother both in for 40+ and 20+ yrs respectively) - Restrictive breathing can be dangerous and you will be more of a risk to your fellow firefighters is you enter a building..the last thing you want to do is have the focus of the fire turn away from the fire and onto helping save your life. Must you "drop out" NO not unless your towns guidelines say so - but you can offer you help in areas that will be supportive of the efforts. To know where you limits are you will need to talk to your doctor and be HONEST about your stress levels and how much physical work you do on a call. In my fathers case he stopped doing fire calls and wnet straight first aid many years ago - He has saved many lives and has provided a great hand to hold when people are in need - I do not know how he does it...but we are sure proud of him.
        FYI Tilt tests do not provide much information and are rarely used in HCM.
        I am a bit sick this week and have no voice to speak of...but would be happy to answer any private questions simply send me PM (private message) or post it here on the board.

        Best wishes and again I am glad you have found us!
        Lisa Salberg
        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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