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pascalosti Find out more about pascalosti
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  • Running a marathon

    What can I do to run a marathon safely with HCM?

  • #2
    Re: Running a marathon

    Have a full mobile EMT crew slowly follow you the entire route.

    All kidding aside, there are a lot of a variable to consider. Are you currently a conditioned runner? Have you done any long distance training? Do you have an ICD? On Meds? Running 26.2 is not an easy feat and extremely hard on one's heart. We HCM'rs are very sensitive to hydration variances and to prolonged stresses on the heart, the two key things a marathon does. Now many of us can jog and do 5K & 10K and such and thats pretty much the extent. I think the best advise is to see your HCM expert and get their opinion. They know your condition and chances better than anyone.
    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


    • #3
      Re: Running a marathon

      I ran 3 half marathons this year (before I knew about my condition). I will train for the marathon with a Heart Rate monitor slow myself down and keep my beats under the magic number. I personally don't think I will have a high HR since my goal is to just finish and not worry about the time. I'm currently going through tests and talking with my doctor. Just want to know how others have handled it.

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      • #4
        Re: Running a marathon

        Well, your obviously a conditioned athlete. You may wish to look up and research Dr. Barry Maron Director, Hypertrophic Cardiomyopathy Center at Minneapolis Heart Institute Foundation. He is the most foremost expert on HCM in athletes (IMHO).
        There is a couple of things to consider - conditioned athletes typically have larger hearts (athletes heart) - this is normal and expected. Now conditioned athletes also have slower heart rate (also known to happen to HCM're who, upon exertion when you need it most, cannot keep pace. This why we occasionally pass out on stress tests. Have you been seen by and diagnosed by an HCM expert? If not, I suggest it. HCM is often mis-diagnosed. I do think its vital that you get any opinions from an HCM expert and not just a cardiologist. Most cardiologist see very few cases of HCM in their practice, let alone in their career. I live near a major metropolitan area - Los Angeles, and my original HMO sent me to a dozen "experts" trying to find one who would say I did not have HCM. All did, but when I asked specifics - How many current patients do you have, How many have you treated, Surgery etc., the numbers were minuscule - literally less then 5-8 EACH. I can't fathom what a more rural area may be like.
        We have a few conditioned athletes that are on this site, Mainly cyclist and recreational joggers - I don't recall any long distance runners, but I could be wrong. Also - What caused you to first be DX as HCM - was there an event? have you any 1st degree relatives with it? Any premature deaths in the family? these also play into the risk factors of those with HCM. Pascalosti, when we DX with HCM and have a athletic background, its more a shock adjusting. It sounds like running is a passion for you and I hope with the proper input of experts behind you that you can continue in some way. It may not be 26.2, but it could be. This is for the experts to help guide you. You may have to be involved in other ways - perhaps event organization, leading/training/inspiring others, sponsorship, promotion. I hope you can continue, but I also want to be around too! Best of luck!
        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


        • #5
          Re: Running a marathon

          I guess there is hcm then there is hcm.
          A Marathon can get really ugly in the last 10k.
          Training does not always prepare u for that.
          Can a hcm heart deal with dehydration hypothermia etc.
          of course not!
          I have run 11 of them before i got sick.
          You have 3 this year?
          Enjoy your medals .
          Stay well jog 10k
          Please!

          Comment


          • #6
            Re: Running a marathon

            I agree with Marc: the key thing is to consult with one of the HCM specialists.

            Gordon
            Myectomy on Feb. 5, 2007.

            Comment


            • #7
              Re: Running a marathon

              Thanks for the info. Are there any hcm experts (contact info) for Canada preferably east coast.

              Comment


              • #8
                Re: Running a marathon

                EastCoast Canada really!
                Dr.Simon Jackson at the Qe in Halifax.
                He's not an expert but he will consult with experts.
                He has helped many people in my Family with hcm.

                Comment


                • #9
                  Re: Running a marathon

                  Originally posted by Tim West View Post
                  EastCoast Canada really!
                  Dr.Simon Jackson at the Qe in Halifax.
                  He's not an expert but he will consult with experts.
                  He has helped many people in my Family with hcm.
                  QE how convenient
                  I will be seeing my cardio doctor for the second and I plan to bring a boat load of questions. For some reason "consult with an expert " never crossed my mind (now how to ask that).
                  Are there any questions I should not forget? Do you think a student at DAL would take me on as a lab rat?

                  Comment


                  • #10
                    Re: Running a marathon

                    Hcm is not a mystery here.
                    Jackson will do the tests like ekg stress echo mri.
                    In 9 months my niece has gone from diagnosis icd and now myectomey in Toronto.
                    Call him he's good. He studied with Dr. Woo in Toronto (Canadian expert.She presented at the Hcm summit this past summer .)
                    If your in Halifax look me up.

                    Comment


                    • #11
                      Re: Running a marathon

                      I asked Dr. Maron a couple of years ago if he had a problem if I got back into sprint triathlons (5k run, 30-40k bike, 800 m swim). At least for me, he was very discouraging for getting back into that sport. Ultimately I decided I could do each sport individually but had some concerns doing all of them one after another. I suspect that any doctor you ask about this will be reluctant to give a green light to a marathon, if for no other reason than the liability concern. I would also listen very carefully to your own body. I used to do half marathons and felt great at the finish line, but really crummy by the afternoon. On reflection, my body was telling me that while an hour of exercise was great for me, maybe two hours was too much. Also read some of the studies on the risk of endurance sports that are coming out. For some percentage of people, ironman and marathons do long term damage to the heart. And if you get afib/aflutter issues like some with HCM, endurance sports are a trigger for both. Its not unheard of at bigger marathons like Boston and New York to have a runner or two die due to some kind of heart issue--and the people qualifying for Boston are not weekend athletes.

                      I wish you luck in your decision. For me, I am happy to bike, jog and swim, just not on the same day, and all in moderation.
                      Jall

                      Diagnosed with unobstructed HCM in 2004 after a bad experience playing tennis
                      Graduated to obstructed HCM by Dec, 2008.

                      Life outside of HCM: Law, Photography, Tennis, Music, raising kids and camping

                      Comment


                      • #12
                        Re: Running a marathon

                        Its ultimately up to you and your doctor.

                        Do you have an ICD?

                        Dont want to hijack your thread but I think its related. I Officiate amateur Ice Hockey, with and ICD. I have worked over 1500 games at all levels. Last week I went into V-Fib and collapsed. I received 1 shock. My ICD saved my life. without my ICD there is no way they were getting a portable unit to me in time.
                        Diagnosed at age 21
                        First ICD 12/07
                        Vfib 12/14 With appropriate shock
                        Replacement ICD 10/14
                        Sub-Pectoral

                        Comment


                        • #13
                          Re: Running a marathon

                          LooNTooNs - Glad your alive! I assume officiating is considered "a sudden burst" activity and should be avoided.
                          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: Running a marathon

                            Wow! So glad you were protected - even if you only ever need it once, it was worth it for you!

                            Everyone has to weigh the risks and benefits of receiving an ICD and their activities for themselves and their life/relationship situations. That's why it is so important to really do your research and learn all you can about your condition and treatment options and restrictions.

                            Linda

                            Comment


                            • #15
                              Re: Running a marathon

                              I'm so glad you had the ICD!

                              Gordon
                              Myectomy on Feb. 5, 2007.

                              Comment

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