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pascalosti Find out more about pascalosti
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  • #16
    Re: Running a marathon

    Yeah, move heaven and earth to get yourself to an HCM expert, especially since you are an athlete.

    You need to know what flavor of HCM you have and that will affect your prognosis and recommendations.

    I was very active, able to skate (rollerblade) many miles in hilly terrain. Then I wondered why I stand up after a light meal and practically pass out trying to cross the street in traffic. My GP would send me to a cardio guy for a stress test and the SOB (and I don't mean Shortness of Breath) would say that I was "out of shape".

    Fast forward years later to a proper dx and it turns out that the key was warming up to an exercise gradually. What I later realized was that when I went to the park to skate, I had to slowly navigate city streets and sidewalks and that "warmed me up". Same thing with the Bruce Protocol on the treadmill during a stress test- because it started out walking and only gradually worked up to a run, I never showed the symptoms. if they had thrown me on to a running treadmill, I would have hit the wall right away and they would have caught the obstruction.

    Dr Shrerrid in NY was smarter. He told me that there was a good Greek diner across the street from his office, and he advised me to eat a big meal there, then come over for the tests. They caught the higher LVOT gradient right away and confirmed the dx.

    I have more anecdotes but my point in the long story is that this is tricky and eludes a lot of general practitioners. You really need to get to a specialist. I suffered for years before finding someone to get it right. More to you point, they will advise you of limitations and restrictions based on your specific version of HCM. In my case it was never a risk of sudden death (any more than another 50-something male), but a risk of discomfort and increasing disability.
    Last edited by angusjcampbell; 12-24-2013, 01:54 PM.
    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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    • #17
      Re: Running a marathon

      I love your New York Doctor's idea! On my first stress echo, before I was on meds....I flunked quite easily...as I had gradients over 150 mm hg at rest...the stress echo sent me into bigeminy. After I was on meds, years later, my stress echo did not show obstruction except at a very low level. I often thought I should have just gone and eaten lunch before the stress echo. In fact, when ever my MD listens to my heart and says your mur mur sounds much better, I volunteer to eat an apple and walk a flight of stairs if he wants to hear the truth about my life on a daily basis. No one but another HOCM patient can truly understand the eratic nature of the HOCM symptoms. I know this is a thread about marathons....but for me, just planning when I can go for a walk is still an issue....can't be right after I eat, can't be right after my lasix, can't be early morning or late afternoon when my meds have started to wear off...and the rest of the time I am just tired from the beta blockers!! LOL I just moved into a apartment with a 16 step flight of stairs ...on purpose to get more exercise in. We also have a free health club. Hoping to get a new mix of meds next week and include a few more walks each week in 2014. That's my marathon. Best of Luck next week Angus....your notes here on the HCM website have truly been an inspiration to me. I'm gonna try a new medication cocktail over the next few weeks and if I can't get my life quality improved, I'm going to head to Cleveland Clinic for a second opinion...I'm hoping their recommendations don't include a re-do of my myectomy :-0......Thanks again
      Last edited by JillC; 12-27-2013, 12:00 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

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      • #18
        Re: Running a marathon

        Originally posted by LooNTooNs View Post
        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.
        Did the doctor okay reffing? 1500 is a lot of games. Was the blackout instant or did you notice some symptoms before hand? How severe is your hocm?

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        • #19
          Re: Running a marathon

          Originally posted by pascalosti View Post
          Did the doctor okay reffing? 1500 is a lot of games. Was the blackout instant or did you notice some symptoms before hand? How severe is your hocm?
          Initially I went to see Dr Maron in Boston and we decided that my playing days were behind me (I played goalie) and that a transition (after ICD) to officiating would be acceptable and keep me in the game I love. I am in my 7th year and loved every minute of it. Now I'm really not sure of what lies ahead. The night I went into VFib I was working a system the I don't really work that often that had me skating from end zone to end zoned with many stops and starts. I was skating hard and watching the clock, I wanted the game to end. I skated behind one net blew my whistle to end the play. Next thing I felt was the world closing in. No warning, just "lights out" and then I remember someone yelling my name. I opened my eyes to about 10 people standing over me. I knew I passed out, but was in a little fog. I sat up for a few seconds, got to my feet and skated off the ice. The emt's checked me out and agreed a trip to the ER was a good idea. One of my partners on the ice said he saw me "twitch". The ER confirmed that 18 seconds after I went into VFib I received a shock. I spent 3 days in the hospital because when I went down I aspirated and got some stomach acid into my lungs.

          So I had no warning signs, it was like someone flipped a switch. Thank god for the little metal box in my chest that was there to flip the lights back on!
          Diagnosed at age 21
          First ICD 12/07
          Vfib 12/14 With appropriate shock
          Replacement ICD 10/14
          Sub-Pectoral

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          • #20
            Re: Running a marathon

            Good to hear it worked as planned!
            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 . . .

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            • #21
              Re: Running a marathon

              I've run 2 marathons and dozens of 1/2 marathons and 5k's. I have HCM and make it a priority to keep my conditioning up to par (I think getting out of shape and then taxing our hearts is bad for anyone.. but REALLY bad for HCM'ers). I also consult with my doctors and have annual monitors. Not sure there is any perfectly safe way to do a marathon with HCM, on the other hand I don't think its safe to be inactive with HCM either

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              • #22
                Re: Running a marathon

                You have to make your own decisions. I think most docs would recommend against marathons for people with HCM, but they'd certainly agree that staying fit is a good thing!

                Gordon
                Myectomy on Feb. 5, 2007.

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                • #23
                  Re: Running a marathon

                  You have to make your own decisions. I think most docs would recommend against marathons for people with HCM, but they'd certainly agree that staying fit is a good thing!

                  Gordon
                  Myectomy on Feb. 5, 2007.

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                  • #24
                    Re: Running a marathon

                    So interesting Darren! Happy thanksgiving...I was going to post a question to this group asking 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 today 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!

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                    • #25
                      Re: Running a marathon

                      I am by no means a marathon runner....however, the plan for my cardiac rehab which my surgeon, cardiologist and physical rehab person have agreed on is that the short term [4 month] plans for me will target me building up to be able to run a 10K within a specified time. We certainly have a ways to get there, but I am certainly NOT going to be the person that says no. If your medical team is ok with you attempting a marathon....they know you...and you need to decide if you trust them. I certainly trust mine...and as such am not going to go out and solicit other docs until I find one that says no. At least my plans are to be prudently aggressive and follow my doctors advice....if other doctors have their own opinions....thats all well and good.

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