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  • Life Expentancy

    Here's a question for you guys... What is the life expectancy for someone with HCM?

  • #2
    Hi Jim,

    Normal life expectancy actually. Of course each individual is different and those that have complex cases and advancing heart failure need help to prevent their hearts from going into burn out or end stage.

    Of great importance are regular checks with specialized doctors who can help ensure that everything available is done to help the individual live life within the limitations of their disease and realize all the benefits from technology that exists.

    Jim , also if you are into reading long articles you can read and find the answer to many many questions per the best experts in the world.

    Go to http://cardiosource.com

    When you enter the site look at "Specialties" , click on " Congenital Heart Disease". When that opens , look for "Practice Guidelines" . Click on "2003 Hypertrophic Cardiomyopathy."

    You will find in PDF format 27 pages of expert info on everything you can think of asking about HCM.

    I tried to get a direct link to this site but was unable. Maybe Reenie, Tim or someone else with lots of computer savy could get in more directly.

    I hope this helps it is a great resource for me as well.

    Pam
    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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    • #3
      Thanks Jim for bringing this up, and thanks Pam for that link; that article is good one if not a little tedious.

      A couple of things I cannot resolve...

      I have been told that the risk of heart attack for the HCM population excess that of the rest of the population at the rate of 1 to 1.5% per year. I have also been told that this elevated risk is from the time of diagnosis, not form the time of first symptoms. This does not make sense. Many HCM'ers have had years of symptoms before being diagnosed, and following that logic you could say that being blissfully un-aware and un-diagnosed leaves you with less statistical risk. Anyone care to clarify that?

      Another thing I am trying to ascertain is the association if any of angina symptoms (SOB/ Dizzy / Pain) to elevated risk of heart attack. Does the onset of angina put you at higher risk at that moment of the Big One (heart attack) or is the only risk that of the discomfort and possible fainting. I am old enough to remember comedian Redd Fox on TV in "Sanford and Son" always clutching his chest exclaiming "here I come honey" and we all are familiar with similar stereotypes.

      Without trying to be morbidly obsessive (which is not good for quality of life), I am just trying to figure out how much to modify my behavior and exercise habits in order to mitigate risk. Consistent with the paper Pam referred to I have been told by my doctor simply to avoid competitive sports and not to race up steep long hills on my (in-line) skates, for example. In my case, once I warm up gradually to any activity I can continue on until otherwise exhausted without ever getting symptoms. That's why I never get symptomatic on a stress test - the protocol always starts out slow, so I surprise the technicians by blowing past my target heart rate and still running strong 10 minutes later at the maximum speed and elevation for the test (OK, a little winded). It's when I go from a complete rest to immediate mild exertion such as stairs that I get symptoms.

      My particulars: Male, 45 years, HCM with latent provocable obstruction. Max. septal wall thickness = 2 cm. I've never been a competitive athlete but I've always been fairly active. I'm still a certified in-line skating instructor and recreational skater and am ready to start my 2005 season as the weather improves.

      I know that the answer will likely "it depends", but I would be much obliged if someone could point me some further information on this that could help me make up my own mind. I do not want to over-do it, but I also don't want to be a drama queen and severely limit my activity, coping to HCM as an excuse.

      Can I use the old axiom "If it feels good, do it"?
      Angus Campbell
      Golden Isles Region, Southeast Georgia, USA

      Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
      Myectomy Jan 9th 2014 at Cleveland Clinic
      Drs Lever and Smedira

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      • #4
        I have been told that the risk of heart attack for the HCM population excess that of the rest of the population at the rate of 1 to 1.5% per year. I have also been told that this elevated risk is from the time of diagnosis, not form the time of first symptoms. This does not make sense. Many HCM'ers have had years of symptoms before being diagnosed, and following that logic you could say that being blissfully un-aware and un-diagnosed leaves you with less statistical risk. Anyone care to clarify that?

        I'd suggest that the increased risk can only be measured for the HCM population that has already been diagnosed. It might be fair to assume a similar level of risk exists in the undiagnosed but affected population.

        It might well be that being blissfully un-aware/un-diagnosed leaves one with a higher statistical risk. The risk in the affected but undiagnosed population is averaged-in with the rest of the general population to form the baseline against which the 1-1.5% statistic was produced.

        As to the rest of your questions, I certainly don't have any answers, but they're great questions.

        Regards,
        Rob Thomas
        --Living life on the edge .. of a continent!
        Charter member: Tinman Club

        Comment


        • #5
          Hi Rob, Hi Rob, Hi Rob,
          Yeah – It’s obvious that the only population that can be examined are those who have already been diagnosed, and those who have not been diagnosed but have dropped dead from a sudden cardiac event, and were later identified. Makes for a somewhat lopsided study don’t you think?

          Angus,
          Contrary to what everybody is saying, the life expectancy of someone with HCM is exactly 124.749638 years. (Do you know exactly what time it was when you were born?)

          Actually, your old axiom is probably a very good rule of thumb. If it doesn’t trigger any symptoms it probably is good for keeping you at the best possible shape you yourself can achieve. However, you have to be alert to delayed reactions also. If you feel great while exercising, but are a bit unsettled up to even a few hours after you’ve stopped, it would be best to cut back a bit in the future. If you feel great before, during and after – well my friend, more power to you. Betcha I get to 100 before you!
          Burt

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          • #6
            Doh! I guess I clicked "submit" a few too many times. Thanks to Linda for cleaning-up after my twitchy mouse button.

            Rob
            --Living life on the edge .. of a continent!
            Charter member: Tinman Club

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