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Active Sports and HCM, a recipe for disaster??

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Darren1 My real name is Darren, I have HCM and am a VERY active person that loves to exercise. Find out more about Darren1
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  • Active Sports and HCM, a recipe for disaster??

    Ok, I enjoy pushing myself to physical exhaustion. I am one of those people that LIKES to run untill he feels like he is going to collapse (I just don't want to collapse for real!). I have HCM am 34 years old with a septum that measures 26mm and few symptoms (actually, practically none). What do people like myself who enjoy sports like Running, Skiing, Scuba Diving and Rock Climbing do? Do we stop these activities altogeather? Do we just live and "risk it"? What about the sudden death concerns? Are we ticking time-bombs? What is the life expectancy of someone with HCM? Isn't sex intense exercise (is sex as dangerous as running?) Whew! How are those for some questions to get the topic started?
    3
    yes
    33.33%
    1
    no
    33.33%
    1
    does sex count?
    33.33%
    1
    what's exercise?
    0.00%
    0

  • #2
    Wow!

    Based on what I've read and heard people on this site will crucify you for taking such a risk. Although I would have to agree with them, I still think that we need to know more about the effects and risks of streneous exercise with people who have various degrees of HCM. I believe, that especially in borderline cases which often time present themselves as fertile ground for overdiagnosis of HCM, you can create an unnecessary perception of heart disease, and that in itself can create a considerable risk to the well-being of the active person.

    Your measurements are significant and should not be taken lightly. Nevertheless, you're opening up a very good discussion.

    Comment


    • #3
      that's harsh!

      If people feel "crucified" by people expressing their concern for your well-being, this is the first I've heard of it.

      We did have one over-zealous poster whose method of expression was unacceptable, that is the only example I can think would fit your use of the word "crucify."

      Dear Celtic,

      You are a grown up and are able to make your own decisions about what you will and won't change about your life. But be aware that stop-and-go sports (especially basketball) are very hard on HCMers. You should know that a lot of the sudden deaths happen on the court.

      Your septum is very thick. Are you seeing a specialist? Are you a candidate for a myectomy? Some people are able to return to many activities they couldn't do pre-surgery.

      I think most HCMers stop extreme sports or any competitive sports once they know the risks involved.

      You can search the board for "'sudden death'" and athletes" to find all the posts for atheletes who dropped dead.

      I think Bert might have been referring to some people's stance on parent's letting kids play in sports and at what age does the kid get to make their own choices. That is a DIFFERENT thread alltogether and I highly recommend we refrain from going into that one again.

      My brother gave up all sports except yoga and hiking. I do tai chi.

      S

      Comment


      • #4
        Sarah

        I'm sorry about using the word "crucify". I did not mean any malicious intent. Forgive me, but it's the french canadian in me that comes through as well as the fact that english is a second language. I don't always use words appropriately and in this particular case I can understand your displeasure.

        Sincerely,

        Bert

        Comment


        • #5
          s'ok

          Dear Bert,

          Apology accepted. I have been in similar situations myself.

          S

          Comment


          • #6
            My husband doesn't curb his amount of exercise because of his HCM unless it physically makes him feel bad. He doesn't do it often, but sometimes he will go out in the yard and play with the kids, even playing football with them. Mind you, he doesn't run like he used to, but it's still strenuous. (All this is against my will, of course.) I do need to add that he has an ICD so he feels he's protected from sudden death. I also need to add that he often feels like $*** when he's done playing hard. Anyway, Celtic, to touch on why it's recommended not to push yourself til you drop... there are 2 main issues. 1) When you push so hard, you run the risk of creating arrhythmias. Some of these might be fatal. 2) Thick septums are stiff, and when exercising, they don't always get the oxygen diffused completely through the muscle. That can cause lots of problems too. All right, now I'm getting off my soapbox. I'm very interested in how this thread will evolve......hmmm. Wonder where my box of popcorn went. I think I'm in for a show....
            Reenie

            ****************
            Husband has HCM.
            3 kids - ages 23, 21, & 19. All presently clear of HCM.

            Comment


            • #7
              Celtic,

              Your septal measurements are about the same as mine were. For many years before being diagnosed, I was very active, then the symptoms came on very slowly. While lifting weights for example, I would get light headed upon completion. Then came muscle fatigue, SOB, and finally chest tightness. I reached a point where my body would prevent me from doing anything extreme.

              I would be cautious about what you do. While it is your decision, your heart is working harder than it should. This may cause long term trouble down the road.

              Bob
              Cleveland Myectomy Crew
              Member since November 2002

              \"Chance favors the prepared mind!\"

              Comment


              • #8
                Symptoms while working out...

                My symptoms? Virtually none. Unless of course I just don't recognize them... When I run (6 miles three times a week) I get out of breath because I try to push myself to that point. After working out hard, I do feel slightly light-headed but then so do most of my "normal" friends. Muscle soreness and fatigue also seem like the normal response of a healthy body to an intense workout... what should someone be looking for that would be an indicator of abnormal responses? Are their indicators? What about wearing a halter or something else to determine just how stressed my heart is? Is it completely random when people experience sudden death? While I like to push myself, I am NOT on a suicide mission. Thanks for the input, I'm full of questions and hope you all can handle more! Also, as far as being "crucified", the person that I most respect was crucified a couple thousand years ago and I would be proud to leave this world the same way He did. I 'm in no rush however .

                Comment


                • #9
                  Normal symptoms...

                  I guess the biggest question I would have is, how long have you been pushing yourself this hard? One would think that over time, soreness, fatigue, short of breath and light-headedness would not be as significant because of conditioning. Unless, you guys are out there pushing so hard everytime that you thrive on the pain. I know people like that! They do exist!

                  Anyway, take the advice from the folks on this board who have acquired a great deal of knowledge about HCM. Perhaps an exercise stress test would be in order to see what is really happening to the heart under these conditions. They can really push you on a treadmill. My son just had 2 done in the last couple of weeks, and it can tell you things you never imagined despite of great exercise tolerance. Best of luck to you and keep in touch.

                  Fitness and exercise is definitely a topic that I'm interested in as it relates to cardiac abnormalities.

                  Take care, Bert

                  Comment


                  • #10
                    Re: Symptoms while working out...

                    Originally posted by Celtic
                    My symptoms? Virtually none. Unless of course I just don't recognize them... When I run (6 miles three times a week) I get out of breath because I try to push myself to that point. After working out hard, I do feel slightly light-headed but then so do most of my "normal" friends. Muscle soreness and fatigue also seem like the normal response of a healthy body to an intense workout... what should someone be looking for that would be an indicator of abnormal responses? Are their indicators? What about wearing a halter or something else to determine just how stressed my heart is? Is it completely random when people experience sudden death? While I like to push myself, I am NOT on a suicide mission. Thanks for the input, I'm full of questions and hope you all can handle more! Also, as far as being "crucified", the person that I most respect was crucified a couple thousand years ago and I would be proud to leave this world the same way He did. I 'm in no rush however .
                    Hi again. Bert is right, a stress echo test would show exactly what happens to your heart when you exercise. A couple of things I want to mention.... Many people here have doctors who have told them to keep their heart rates below a certain # whenever possible. My husband's # is 110 bpm. You should ask your doctor about that. Another issue is long term wear and tear on your heart. If you have a pretty thick septum, which you apparently do, it will beat more forcefully than a normal heart and the oxygen may not diffuse completely through it, especially when you are exercising. When it beats so forcefully it doesn't get to rest in between beats like a normal heart. That makes it "wear out" faster than a normal heart. That's the reason so many with HCM take medicine even if they don't experience arrhythmias. So you might be causing long term damage working out like you do. Obviously I'm no expert. This is just my two cents... Please take better care of yourself. You can stay conditioned without pushing yourself to exhaustion!

                    Reenie
                    Reenie

                    ****************
                    Husband has HCM.
                    3 kids - ages 23, 21, & 19. All presently clear of HCM.

                    Comment


                    • #11
                      Celtic, I just thought I would let you know that not all sudden death comes from working out. I have an ICD and It has saved my life one time so far. I have had it less then a year. I was just at work when my heart went nuts. I am a checker in a store, I was not lifting any thing heavy at the time. Just a gallon of milk. I started to get dizzy,light headed and SOB. I called to have someone come and take over my checkstand and got zapped befor someone got to me. So you can have sudden death just standing around. So be very carefull when you put your heart under extra stress. Take care and let us know about any other questions you may have.
                      Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

                      Comment


                      • #12
                        Celtic, Have you been evaluated by an HCM expert? You really need to have some input from an expert who has done a complete evaluation of your situation. I don't remember if you have given us your history, or info on who and where you receive your treatment from. From your posting, and I may be missing previous info, it would seem that you have not really been given many guidelines by your doctor. Lisa is on vacation this wk, but call her at the office next wk, and talk about all your questions and where you might be best evaluated. If you are already being seen at an HCM center, ask them for guidelines. I would like for you to enjoy your activities without driving yourself and us crazy worrying about you overdoing it! Also, as Donna has pointed out, problems don't always occur during intense exercise. You need an evaluation of risk factors to determine your best course and options. We'll be waiting to hear how things are going,. Linda

                        Comment


                        • #13
                          More details about me and my heart...

                          Ok, first I want to thank all of you for your input. I also want to answer some of your questions... I have been given a treadmill test and they found nothing unusual, I have also been given a halter for 2 days (during which time I worked out).. again, no abnormalities were seen. I insisted that the doctor run both of those tests just to be safe..The doctor I've seen here in San Diego is a specialist in HCM for Kaiser and while he has yet to tell me that I can be reckless in my workout habits, he hasn't told me to modify my lifestyle to any large degree either. I was told to watch for symptoms when exercising and STOP ALL ACTIVITY if any symptoms occur. He also mentioned that surfing might be dangerous since if I was to have an attack, I could drown (of course if I had one on the freeway at 70mph, I could die too). When I asked him if HE would stop surfing (he surfs as well) if he had the same diagnosis as I have (size/etc..), he said "I can't answer that". Like everyone else, I have calmed down alot since my college days, (maybe I'm old now?). In my younger years, the "high risk" years 18-26, I was a frequent skydiver, heavy beer drinker (I have been alcohol free for 10 years now), used to abuse my system running on little or no sleep and taking "ephedrine" as a stimulant to keep my energy level up during finals week.. I was also an active basketball player and ski-aholic (I attended college in Colorado). Was I trying to kill myself? Does the fact that I survived the "idiot" years mean anything? I don't know.. maybe just that Gods Grace shined on me for some reason. I didn't know about my heart disease untill 2 years ago. Since I'm a married man with 3 kids, I do take it easier now (no skydiving, no basketball, no alcohol and definetly no stimulants!!). I want to grow old and see my kids grow up, I also want to live life to the fullest possible, even if their is some risk involved (I don't however want to be foolish). To answer the question about "working out frequently, don't you become conditioned?", I do but then I raise the bar a bit higher. Anyway, sharing this with you all is like therapy and the reason I started this discussion was to get everyone talking about how/if they deal with active life and HCM. Not to brag about being reckless or to have contests "how far can we push it before we drop dead". I do know that I'm mortal, I have experianced shortness of breath and other symptoms (many years ago).. at the time I thought they were strictly anxiety my doctor said he agrees they probably were. I'm especally interested in learning about the defibs that some of you have implanted and more about all of YOU, your stories and how you all deal with HCM (if you are active like I am). Oh, a couple last details about me.. I was adopted at 3 months, I have contacted my birthmom about this... she is getting checked, my birthdad died of alcoholism when he was 30 (thank God i quit drinking before i learned that). My youngest son has HCM as well (that is how I discovered I had it).. he is 2 1/2 and has a septum that measures larger than mine, and has asthma! In spite of all that, he seems very happy and his checkups are ok (the septum doesn't appear to be growing any larger .. or decreasing). You could add him to your prayers if you pray.

                          Comment


                          • #14
                            Hi Celtic, When I was diagnosed 30 years ago I was also a runner, but was told to stop immediately, which was very hard because I hated the thought of giving up something I had worked hard to attain.
                            I have had several stress tests since and with more knowledge now I have the green light to exercise.
                            The stress tests found that my heart worked quite well while exercising.
                            I have also worn a Holter monitor while doing my normal exercise and nothing abnormal showed while doing exercise and when there were abnormalities it was while I resting.
                            I switched to riding a bike, I have three now and do both street riding and mountain biking.
                            I also plan to go in a bike event in June on a 50 mile coarse.
                            I have to see my HCM doc in April and will run it past him, hopefully he will agree to let me participate.
                            I'll post the out come.
                            Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
                            So if you are capable of thought then you are capable of great things
                            Good luck and stay well.
                            Glen

                            Comment


                            • #15
                              Well, sounds like you've had good advice from your doc, and the decisions won't come easy, no matter what. You know the issues such as putting yourself in a situation where you can't get help if you need it. This was why we let our son continue with volleyball for a while(he decided when to stop) but eliminated the skiing. Celtic, your son will be in our prayers, as are so many others. Do we know about him, maybe from Mom ? Linda

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