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NEJM article on HCM w/obstuction... information to KNOW

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Lisa Salberg Find out more about Lisa Salberg
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  • #16
    This data is very new so I would not be suprised that you had not heard about it...in fact until the past few weeks the information was not available. Do not worry about what if's and what might be's... look at how you can reduce your risks...in your case step one..try the meds... step 2 review your options if the meds do not work. Step 3 worry about that after you get past step 2
    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)

    Comment


    • #17
      Re: NEJM article on HCM w/obstuction... information to KNOW

      More discussion in the med. lit re this paper!

      Copyright 2003 American Academy of Family Physicians
      American Family Physician

      April 15, 2003

      SECTION: No. 8, Vol. 67; Pg. 1817 ; ISSN: 0002-838X

      IAC-ACC-NO: 100572091

      LENGTH: 481 words

      HEADLINE: Outcome predictors in hypertrophic cardiomyopathy; Tips from Other
      Journals.

      BYLINE: Zepf, Bill

      BODY:
      The debate continues over whether the degree of left ventricular outflow
      obstruction is an important discriminator of cardiac risk in patients with
      hypertrophic cardiomyopathy. Maron and colleagues conducted a prospective study
      of outflow obstruction in patients with hypertrophic cardiomyopathy and its
      association with death or heart failure.

      The authors enrolled 1,101 consecutive patients diagnosed with hypertrophic
      cardiomyopathy at two cardiac referral centers in Italy and one in the United
      States. Echocardiographic measurement of the peak outflow gradient in the left
      ventricle was obtained under resting conditions, taking care to avoid any
      inclusion of the mitral regurgitation jet. Mean duration of follow-up was 6.3
      years for risk of sudden death or progression to severe heart failure (New York
      Heart Association functional class III or IV).

      At the time of last follow-up, 12 percent of the patient cohort had died as
      a result of hypertrophic cardiomyopathy, and 24 percent of the 914 surviving
      patients (216 patients) had progressed to severe heart failure. A peak outflow
      gradient of 30 mm Hg was considered the threshold at which the risk for death or
      heart failure progression increased, especially in patients older than 40 years
      (see accompanying figure). Outflow gradients higher than 30 mm Hg did not confer
      additional risk.

      The authors concluded that echocardiographic measurement of a left
      ventricular outflow gradient greater than 30 mm Hg in patients with hypertrophic
      cardiomyopathy predicted an increased risk of death or severe heart failure,
      especially in patients older than 40 years.

      BILL ZEPF, M.D.

      Maron MS, et al. Effect of left ventricular outflow tract

      obstruction on clinical outcome in hypertrophic

      cardiomyopathy. N Engl J Med January 23, 2003;348:295-303.

      EDITOR'S NOTE: The diagnosis of hypertrophic cardiomyopathy is relatively
      straightforward (i.e., hypertrophied left ventricular wall without chamber
      dilation). However, predicting the long-term outcome is not as clear-cut. The
      clinical course in the disease varies from incidental findings noted on
      echocardiography in asymptomatic patients to sudden death at a young age. While
      some previous studies had suggested that an outflow gradient greater than 50 mm
      Hg was a relative indication for intervention, other investigations noted that
      the degree of outflow obstruction did not seem to correlate with adverse
      outcomes. This larger study confirms a predictive role for quantifying outflow
      obstruction and sets a lower cutoff value for identifying patients at elevated
      risk for complications. The high rate of death and progression to severe heart
      failure over the relatively short time period in this study emphasizes the
      importance of stratifying risk and planning interventions in patients with
      hypertrophic cardiomyopathy.--B.Z.
      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)

      Comment


      • #18
        Bump!

        ... for the newcomers.
        "Some days you're the dog... some days you're the hydrant."

        Comment


        • #19
          Well all they had to do is ask me








          Diagnosed 2003
          Myectomy 2-23-2004
          Husband: Ken
          Son: John diagnosed 2004
          Daughter: Janet (free of HCM)

          Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

          Comment


          • #20
            I'm sorry i was being a smartelic so i'm very sorry i just wished the meds had worked for me but was told in the very beginning there was only a slight chance they would, but that doesn't mean the meds won't work for anyone else

            Shirley
            Diagnosed 2003
            Myectomy 2-23-2004
            Husband: Ken
            Son: John diagnosed 2004
            Daughter: Janet (free of HCM)

            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

            Comment


            • #21
              I would love to print this article out and give it to my new cardiologist and especially give it to my last 2 cardiologists.

              My new cardiologist has some knowledge of HOCM, but not very much.

              But my last 2 cardiologist were completely oblivious to this disease, I knew more about it than they did (after reading this site and talking to Lisa on the phone).

              I have a resting gradient of around 50 and I know it goes way up during exertion and after eating. I am 41 years old now. I have class 3 failure (some days it is class 4). The news does not seem very good for me.

              Eileen
              49 yrs. old
              Diagnosed at 31.
              Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
              First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
              Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
              Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
              My brother passed away suddenly at 34 yrs old from HCM.
              2 teenage children, ages 17 and 15.

              Comment


              • #22
                Has there been any change or addition to this article? I begin to suspect my cardio is suggesting ablation with this in mind, without saying so much so. Soooo.... if these findings are supported by more research, i may start to think all over again about ablation. Just food for thought: my mother died of heart failure, and she had HOCM (and it seems my symptoms, progression etc. are all the same - great !).

                Ad
                \"Hope is disappointment postponed\"

                Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

                Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

                Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

                Meds (current) sotalol, dabigatran, furosemide.

                Comment


                • #23
                  septal myectomy but few symptoms

                  After reading that article it makes me more thankful that I had the septal myectomy even though I didn't have many symptoms. Also being 66 put me right in the target area with a resting gradient of 200. I am doing fine now and able to do about everything that I want to do.
                  Bettie
                  septal myectomy on Jan. 27, 2005

                  Comment


                  • #24
                    Betti

                    That is such great news!!!!!!

                    Shirley
                    Diagnosed 2003
                    Myectomy 2-23-2004
                    Husband: Ken
                    Son: John diagnosed 2004
                    Daughter: Janet (free of HCM)

                    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                    Comment


                    • #25
                      News Releases and Media

                      Bettie,

                      So glad to hear that you are doing so well. May you continue to do everything that you want to do!
                      Dorothy

                      Diagnosed 1996, Myectomy Aug. 2000, 3 Radio-frequency ablations for a-fibs 2003-2005.

                      Comment


                      • #26
                        It might be worth noting a few things about some of the statistics and please correct me if i'm wrong. In a few studies i've read they count "death" if somebodies icd kicks in. It's worth noting that in a lot of studies they are counted as a death for statistical purposes, even though those people (thank god) are alive. In a lot of detailed studies they do mention this in the study.

                        I realise they should be counted but thought i'd let a few of the new members know sometimes these studies aren't talking about actual deaths. I'm not sure if this is relevant in this particular study or not.

                        Sometimes reading a summary of a report can be slightly misleading. How many people with ICD's on this forum have had there ICD kick in? Statistically it's not good but yet we all enjoy your contributions on this board.

                        I always enjoy Sarahs first few lines too newcomers on this board about "most people with HCM can lead normal long lives" It's true and uplifting, thanks.
                        \"There is no GENE for the human spirit\"

                        Comment


                        • #27
                          depot metro tham luong

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