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Jogging speed and HCM

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Srmartinson Dx in 1996, ICD in 4/2004, Battery recalled, 2nd ICD lead failure 3/31/07, rec. 26 inappro. shocks Find out more about Srmartinson
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  • Jogging speed and HCM

    Happy belated thanksgiving everyone! I wanted to ask this group if there was any research about running speed. When I initially began running 8-12 miles I ran slow 10-11+ minute mile pace but this past month I did a 1/2 marathon and a 5 k yesterday and am getting into the 8:50-9 min mile pace...I know starting and stopping is discouraged for the person with HCM but what about starting slow and gradually getting faster as the race goes on...then the last 1/2 mile I have always slowed way down..likely their is no research but wanted to ask


    Sent from my iPhone using Tapatalk
    Dx 1995 with non-obstructed HCM, verapamil 120mg
    2004, ICD, battery recall and migration x2 (3 surgeries)
    2007, 26 inappropriate shocks fr. Lead failure, two lead extraction surgeries...(total 8 surgeries in 4 years NO FUN)
    Since 2008, Living without ICD.......
    2011 First chest pains, frequent Began thinking about new ICD,,,,
    10-2014 I'm ready!

  • #2
    Re: Jogging speed and HCM

    I don't have the clinical explanation that you are looking for but I have some anecdotal experience.

    A long time ago in a galaxy far far away, I used to manage the (New York) Central Park Skate Patrol Skate School (in-line skating).
    http://www.skatepatrol.org/skateschool.html

    Before I was properly diagnosed with HOCM, I used to wonder why I could on one hand skate 10-20k in the park in vertically challenging terrain, and then maybe sit down for 20 minutes and chat with someone or have a tube steak (NYC dirty water hot-dog) and then stand up and practically pass-out.

    Long story short, it was Dr Mark Sherrid at St Luke's in NY who diagnosed me with HOCM and explained that the secret to my relative athletic success at the time was due to my "warm up" by skating casually on side-walks and side streets in order to get to the park. But then, after a period of rest - exacerbated by food - especially carbs - any immediate exertion would doom me to classic HCOM symptoms.

    So I never suffered from stopping exercise suddenly, but sure did suffer from bursting into activity from a period of rest.

    Now, ten months post-op, I'm thinking of going to the attic and looking for those rollerblades.
    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

    Comment


    • #3
      Re: Jogging speed and HCM

      So I never suffered from stopping exercise suddenly, but sure did suffer from bursting into activity from a period of rest.
      Now, ten months post-op, I'm thinking of going to the attic and looking for those rollerblades.
      I speak solely for myself but what a great story....I can tell you that I really like the idea of you getting the skates out......if the doctors say yes.....GO FOR IT. The whole idea of having a myectomy is to improve the quality of life....and once you have an understanding of the mechanical issues associated with a restriction......the idea is to literally IMPROVE THE QUALITY OF YOUR LIFE....which comes from DOING what you enjoy. Rather than sit around, moan, praying for something to improve why not seize the opportunity and find out if you can. The worst thing you discover is you can't or you have to modify how you do something. I was just reading an article in one of the cardiac physical therapy journals about the current restrictions on post-sternotomy exercise being too resitrictive and at least one major hospital changing its protocol due to concerns that surgery patients AREN'T improving due to lack of sufficient exercise.....the approach of "can do" or "can try"....in my view is much more attractive than....I can't because...I might....or I am made of glass.

      Please do keep us updated if you are able to try...you got me to go looking for my skates too...I would want to make sure that I had a good set of wrist guards too just in case of a fainting episode.

      Comment


      • #4
        Re: Jogging speed and HCM

        Thanks Jordan and Angus for your responses!

        Originally posted by angusjcampbell View Post
        So I never suffered from stopping exercise suddenly, but sure did suffer from bursting into activity from a period of rest. .
        So interesting...I always wondered about stopping my exercise suddenly...likely not going to try this but totally appreciated reading your story. Thx!
        Dx 1995 with non-obstructed HCM, verapamil 120mg
        2004, ICD, battery recall and migration x2 (3 surgeries)
        2007, 26 inappropriate shocks fr. Lead failure, two lead extraction surgeries...(total 8 surgeries in 4 years NO FUN)
        Since 2008, Living without ICD.......
        2011 First chest pains, frequent Began thinking about new ICD,,,,
        10-2014 I'm ready!

        Comment


        • #5
          Re: Jogging speed and HCM

          Just a note from the tortoise club....I am up to walking a 20 minute mile, three months after myectomy. However, even at this slow pace I need to warm up and cool down. I mistakenly thought that after my myectomy, "burst activity" would not be an issue. My Nurse Practitioner, that used to work at the U of C HCM clinic informed me that problems with burst activity are part of HCM with or without obstruction. It has to do with myocardial oxygen demand mismatch within the thick and disarrayed cardiac muscle fibers. They need time to catch up to the demands placed on them for exercise. I think stopping exercising without a cool down puts "sudden" demands on the myocardium also. So if I don't warm up I have more incidence of chest pain , fatigue , sob with my exercise.
          However, in HCMers with a determination of high risk for SCA Sudden Cardiac Arrest.....there are other factors involved where the burst activity can lead to an SCA event. So in certain people warm up May be enough, but in those at risk for SCA.....Educated discussion with your specialty cardiologist and the need for ICD are the first order before committing to any intensive exercise or sports program.
          Last edited by JillC; 12-02-2014, 10:45 AM.
          After years of symptoms:
          Officially Diagnosed HOCM 2006
          Myectomy 3/11/13 at non-COE
          Extended Myectomy 7/23/14
          At Mayo with Dr. Joseph Dearani

          Comment


          • #6
            Re: Jogging speed and HCM

            As HCM is completely unpredictable - there are no standards that apply to everyone on running. Yes, general guidelines on diet, weight lifting, exercise, etc., but I doubt any COE or research facility would say categorically "HCMrs can safely go at a 10 min mile and no faster." We are talking about a disease that can suddenly stop the heart from functioning when stressed. The only guideline I've ever heard was "as long as you can converse while jogging" and this is given out almost everywhere. If anyone has done research, its Dr. Barry Maron as his focus has always involve athletes and HCM. You might have your doctor contact him to inquire.
            Marc
            Diagnosed @ 48
            Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
            Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
            AICD - Valentines Day '08, Spark Plug replaced 11/14
            After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
            Quietly going insane . . .

            Comment


            • #7
              Re: Jogging speed and HCM

              It is interesting to consider the point you just raised....the obvious issue with athletes that don't realize that they have HCM usually leads to a gruesome discover at as the result of an autopsy following an untimely death. I may have briefly mentioned that I have had a number of conversations with both my cardiologist and the physical therapy people about setting limits for physical activity post-myectomy. I don't have any illusions about engaging in competitive sports, but certainly do intend to pursue a wide range of activity....including running [as distinguished from walking and jogging], swimming laps, weight training, and am going to revisit the issue of scuba after a reasonable time interval has passed. I am going to do some digging to see if I can find anything else out there in the literature on the topic. If anyone has a question with respect to a specific activity, please do PM me as I am going to put together an activity list and see what I am able to learn.

              I will say this.....I just got a copy of the results of an ecco that was done four days post-myectomy and a comparison with the one which was done immediately prior, and the difference on paper is stunning.....can't wait to see what it is like in real life. One of the first tests I am looking forward to trying is abdominal crunches and regular push ups as soon as the sternal restriction is lifted.

              Comment


              • #8
                Re: Jogging speed and HCM

                Jordan,
                Guidelines were put out by a committee headed by Dr. Barry Maron in 2004..... I put the reference in a post about a month ago in answer to someone's question about burst activities...I'll see if I can locate the reference
                Last edited by JillC; 12-03-2014, 12:12 AM.
                After years of symptoms:
                Officially Diagnosed HOCM 2006
                Myectomy 3/11/13 at non-COE
                Extended Myectomy 7/23/14
                At Mayo with Dr. Joseph Dearani

                Comment


                • #9
                  Re: Jogging speed and HCM

                  Here is a copy of that post with reference:
                  I asked my Nurse Practitioner for some guidelines and info about "Burst Activities" that I could share with the forum as she used to work at the HCM clinic at University of Colorado. She referred me to the 2004 AHA position paper written by experts including Dr. Barry Maron.
                  This is a lengthy medical journal article that ALSO covers other genetic conditions besides HCM that are subject to symptoms both mechanical and electrical from burst activities....IF you decide the entire article is too much, you may be interested in the chart on page 2812 that gives risk stratification for almost every sports activity.... With HCM listed individually. The choice to follow these guidelines is a clinical decision between each patient and his/her doctor.....

                  http://circ.ahajournals.org/content/109/22/2807
                  Last edited by JillC; 11-11-2014 at 09:47 PM.
                  After years of symptoms:
                  Officially Diagnosed HOCM 2006
                  Myectomy 3/11/13 at non-COE
                  Extended Myectomy 7/23/14
                  At Mayo with Dr. Joseph Dearani

                  Comment


                  • #10
                    Re: Jogging speed and HCM

                    Thanks Jill - These are the standard activity guidelines I was going to post. Your last sentence is the most important one.
                    Marc
                    Diagnosed @ 48
                    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                    AICD - Valentines Day '08, Spark Plug replaced 11/14
                    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                    Quietly going insane . . .

                    Comment


                    • #11
                      Re: Jogging speed and HCM

                      Originally posted by JillC View Post
                      Here is a copy of that post with reference:
                      I asked my Nurse Practitioner for some guidelines and info about "Burst Activities" that I could share with the forum as she used to work at the HCM clinic at University of Colorado. She referred me to the 2004 AHA position paper written by experts including Dr. Barry Maron.
                      This is a lengthy medical journal article that ALSO covers other genetic conditions besides HCM that are subject to symptoms both mechanical and electrical from burst activities....IF you decide the entire article is too much, you may be interested in the chart on page 2812 that gives risk stratification for almost every sports activity.... With HCM listed individually. The choice to follow these guidelines is a clinical decision between each patient and his/her doctor.....

                      http://circ.ahajournals.org/content/109/22/2807
                      Last edited by JillC; 11-11-2014 at 09:47 PM.
                      Thanks...its through this kind of posting that the information is located and time saved and it represents a starting point for the discussion that I intend to have rather than a conclusion. But, it certainly helps to have a point of departure.

                      Comment


                      • #12
                        Jogging speed and HCM

                        I would be thrilled to see updated guidelines, especially since those were published in 2004 which likely means the data research is over 12+ years old. Either way, I love the idea of staying active and heart healthy no matter what that means to each person!
                        Last edited by Srmartinson; 12-06-2014, 01:07 AM.
                        Dx 1995 with non-obstructed HCM, verapamil 120mg
                        2004, ICD, battery recall and migration x2 (3 surgeries)
                        2007, 26 inappropriate shocks fr. Lead failure, two lead extraction surgeries...(total 8 surgeries in 4 years NO FUN)
                        Since 2008, Living without ICD.......
                        2011 First chest pains, frequent Began thinking about new ICD,,,,
                        10-2014 I'm ready!

                        Comment


                        • #13
                          Re: Jogging speed and HCM

                          I too would like to see some updated list - but really, what would change? the risk doesn't change. But there are many new and variations of sport activities and these should be included and evaluated.
                          Marc
                          Diagnosed @ 48
                          Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                          Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                          AICD - Valentines Day '08, Spark Plug replaced 11/14
                          After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                          Quietly going insane . . .

                          Comment


                          • #14
                            Re: Jogging speed and HCM

                            Those guidelines were included, with some minor modifications, in the 2011 consensus guidelines document on the diagnosis and treatment of HCM. That document is available in a variety of places online. I won't post a link, because a lot of the places I can get it, most people can't unless they also work at a university or medical institution. But the title is "2011 ACCF/AHA Guideline for the Diagnosis and Treatment of Hypertrophic Cardiomyopathy: A Report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines," so it's not hard to find.

                            Gordon
                            Myectomy on Feb. 5, 2007.

                            Comment


                            • #15
                              Re: Jogging speed and HCM

                              Those guidelines were included, with some minor modifications, in the 2011 consensus guidelines document on the diagnosis and treatment of HCM. That document is available in a variety of places online. I won't post a link, because a lot of the places I can get it, most people can't unless they also work at a university or medical institution. But the title is "2011 ACCF/AHA Guideline for the Diagnosis and Treatment of Hypertrophic Cardiomyopathy: A Report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines," so it's not hard to find.

                              Gordon
                              Myectomy on Feb. 5, 2007.

                              Comment

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