If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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Running...is it really all that bad?

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  • #91
    hey- I was diagnosed at age 14. I recieved an ICD at age 14, had a myectomy at age 17, and another ICD at age 18. Now I am 18 and I honestly most days don't even notice I have HCM. I jog, I play basketball, I drink on weekends, and I feel just fine. I know that not everyone is in the same boat as me, but for those of us who can do these things I think it is great. As long as you have a check-up every year and everything is stable, then why not live like you want to? Also, im a fairly active guy, im in bball league every mon. wed. fri. and I like to ride bike and jog. My defibulator has NEVER gone off. Not even once. So its all good right now. I hope I didn't just jinx myself......

    Comment


    • #92
      Daniel, given your history I wonder if you should be on a bball league 3 times a week. Is your specialist ok with you playing basketball and jogging daily? Are you seeing your regular cardiologist or your specialist for follow-up care?

      Reenie
      Reenie

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

      Comment


      • #93
        Now this is the sort of animated discussion that forums are all about! I have just joined the group - was diagnosed a week ago - and my eyes were drawn to this thread because I am an athlete (racing cyclist / triathlete) of long standing. Sorry if I am raking over old ground for many of you.

        First of all I should say that it appears compared to many that I have this condition in a very mild form and I do sympathise with those for whom this condition makes even mild exercise difficult or impossible. It always amazes me how people adapt physically and emotionally in such circumstances - I'm not sure I could. I'm sure I'll sound very self-pitying and I should think myself lucky compared to people really suffering at the hands of HCM, but I am in the early post-diagnosis 'life isn't fair' phase, so please bear with me.

        Well I haven't read every post on this thread but enough to realise the exercise thing is very contentious. I'm with Lisa that this is very much an individual thing, however, I must say I share a little of Darren's frustration in getting at and quantifying some really hard data on this subject in order to make an informed choice.

        I have been a competitive sportsperson (cycle racing) off an on for 25 years and I have just been diagnosed with HCM. My cardiologist immediately advised me against strenuous exercise and certainly racing. As only weeks earlier I had been racing a triathlon without incident and had never experienced symptoms during exercise, I must admit I struggled with this, though maybe my ignorance is partly responsible.

        A couple of thoughts / questions?
        1. Is it possible to say when I developed HCM? Could it be that I have very recently developed this or could I have had this from a child and have been doing competitive aerobic sports with this condition all my life? If so, does that imply anything about the risk of continuing? As far as I understand I have none of the high risk factors of SCD.

        2. What does 'strenuous' mean? Surely this will be different for a trained athlete than for a normal person - let alone a genuine 'coach potato'.

        At the moment I have made only minor lifestyle adjustments - luckily we're in the off-season so I'd be taking it pretty easy at this time of year anyway - but still touching the early 170s bpm at times while cycling to work. I really would like some hard data to make an informed decision about what to do next year / season rather than the blanket ban that seems to be applied by the cardiologist community. Also most of the articles focus on the young athlete. Sadly I have now reached 'veteran' status in the sports I participate in. Is that still more reason I should take it easier or have I survived the highest risk period...?

        My cardiologist has referred me to Prof McKenna in London for a further consultation but that could be a while off. In the meantime I'd be interested in your views and especially if you can help me get to some good data.

        Comment


        • #94
          Rob - First, let me say "Welcome". You have a lot to get used to, a lot to learn. Keep reading thru the posts and the rest of the site, there's a lot of info/personal accounts. Have you searched out the site for the UK Cardiomyopathy Assoc.?

          I'm glad you will be seeing Prof McKenna - he's certainly one of the best.
          The cardiologist you have already seen may appear to be overly cautious with your activity level, but keep in mind, this is a new diagnosis and he prob doesn't have a good feel for where you are just yet. When all the info is in, plan to discuss all the findings and set reasonable limits for YOU. In the meantime, he doesn't want to take unnecessary chances.

          We'll look forward to hearing more from you - best wishes, Linda

          Comment


          • #95
            Welcome to the "club" - Sorry you had to join!

            Rob,

            Your posts are a breath of fresh air to me. As a fellow athlete who is very active (Runs 4-5 days a week, 5-7 miles and 10+ on long runs), I get frustrated with all the "knee jerking" that I see from doctors when they diagnose people with HCM. It's easy to understand why they may be overly concerned (afterall, the consequence of mis-diagnosis could be death).
            I have heard of two people within my group of friends/co-workers/etc. that have died from HCM, both were NOT being active at the time. One was an athlete who had run marathons, played volleyball and the other was more of a "couch potato". One died in bed, the other in his living room. I suspect that the likelyhood of sudden death while active is about the same as when innactive. Of course, if we spend alot of our time doing one thing (biking, running, watching tv, sleeping) then we are more likely to be doing that when something tragic occurs.
            Keep posting! Let us know what the doctors say and what your heart measurements are. Oh, and I'd recommend doing a stress test AND wearing a halter monitor while active (biking?) these two tests will give your doctors information that can help you make informed decisions regarding exercise. I personally wore a halter monitor for 2 days and ran hard each day (including hills), pushed myself in every way possible and was told that the readings were "absolutely normal". I hope your results come back clear as well.

            -Darren

            Comment


            • #96
              Darren - nice to hear from you.

              I must admit I have done a lot of agonising since I got diagnosed with HCM. I think I have now accepted that I have something 'wrong' with me, but I am still struggling with what that actually means.

              Assessing the risk scientifically seems very difficult and I appreciate that my cardiologist is likely to be over(??) cautious, but where does that leave me? Well, it leaves me with many unanswered questions. The problem seems to me that there is something of a blanket ban on strenuous sports applied once the diagnosis is made when it's clear to me that every individual has different limitations. I would at least like some help and guidance in assessing the real risk so that I can make an informed choice whether or not to participate and to what level.

              I have had the 48-hour holter monitor test, (unfortunately I was struggling with a bad stomach bug at the time so didn't do anything active whilst wearing it), and that came back 'normal'. I recently had the stress test and again had a 'normal' response. In fact, in the words of cardiologist, the ECG looked "more normal" when exercising than at rest!

              When I think back over what I have done this year alone I do find it very difficult to comprehend the diagnosis. Maybe if I had really been struggling when training or racing I would find it easier to accept. Any symptoms I have had have been at rest, though I suppose I have to accept that exercising could somehow have been a factor. That's why I am going back to get more hard data on the test results.

              Just in terms of your own exercise regime, do you do this competitively or just to maintain a good level of fitness? I have always struggled with running-related injuries but that's a separate conversation! Do you monitor your HR and maintain it below a certain level - if so how did you decide what was appropriate? Do you have any high risk SCD factors? (I don't as far as I can make out.)
              cheers, Rob

              Comment


              • #97
                Exercise..

                Rob,

                There is definitely something wrong with us.. HCM. The question is how we choose to deal with it. As you stated, making any type of scientific analysis of the condition is difficult (at best). Getting a doctor to explain or help access the real risks is almost impossible... they are afraid of giving bad advice or possibly being sued if you were to die. I can understand why they may want to be conservative in their suggestions as far as what we should/should not do, but would love to see more HCM doctors "tell it as they see it" when we visit them.
                About me.. My measurement is 21mm w/o obstruction, Let's see.. I don't have any known high risk markers for sudden death. I am not a competitive runner (average 9 minute miles when I do a 1/2 marathon). I run a half marathon every couple months and plan on doing a full marathon someday. I run to stay in shape and to stay sane I have a garmin forerunner 301 heart monitor/gps/"dick tracey" watch that I wear when running. I don't always run with it, but generally do. My heart rate averages around 140-150 and I don't let it get much above 160, even on "hard" runs.
                Unfortunately, when we ask a doctor for any reasonable way to judge what our exercise program should be, they tell us that we should not break a sweat or get our heart rate above 110 (lol, that's a brisk walk). I do look forward to hearing your findings as you continue to research HCM from the viewpoint of a fellow athlete. I know you are a competitive bicyclist and think that is awesome. If you are like me, you want to live life to the fullest and at the same time not be reckless. Do you have a wife? Kids? It's really tough having HCM and being an athlete... it's kinda like being told you have a disease and then having to decide w/o really good information how you are going to live with it. I'd hate to have anyone be another statistic, but I don't know which is worse.. not doing what you love to extend (maybe) your life or doing what you love knowing it (maybe) will shorten your life. Oh, and I do not get symptoms when running (except shortness of breath and fatigue.. at the same level as my "healthy" friends who run with me). Imagine if we stopped exercising every time we were short of breath? I think they call that resting One of the most unfortunate things about HCM is that there often are no symptoms.. except for sudden death (if you call that a symptom), so relying on the symptoms doesn't seem like a way to predict it either.

                I guess that's enough rambling on for one night. Hope I answered some of your questions. One positive is that biking is supposed to be safer for those with HCM than other sports like Basketball/Racquetball/Running. Of course at the level you bike, it's probably another story.

                -Darren

                Comment


                • #98
                  Darren,
                  I am coming to terms with the fact that competition is really a no-no but I still want to be active whilst minimising the risk of that activity. I am married (no kids) so obviously I am thinking about more than just myself.

                  I have another appt with my cardio in a couple of weeks so I'll come back when I have more data. Glad to see you are knocking out the half marathons on a regular basis and have ambitions to go further. Good luck with that! I'd be interested to know how you set set your HR limits, though. Was this on advice or personal 'feel'?

                  Rob

                  Comment


                  • #99
                    Today is one of those days I hate... the events of last nights Red Wing Hockey game really makes me worry about you athletic types. Darren, you know I love ya and respect you - and you also know you make me nervous sometimes This is the part of HCM that I do not know if we will ever have great data on - how many people die suddenly with asymptomatic HCM and that are athletic??? The problem is that upon death many of these people are not examined properly and we really have no great stats on SD in HCM without symptoms - sad but true!

                    I say this with all honesty...size does not matter here - a little thickening does not mean a little disease and sometimes I think even well trained doctors get this one wrong.

                    As for the question from our new friend (WELCOME BY THE WAY!!) when did YOUR HCM show up.... That is hard to tell and you would have to look back in your medical records if you have a previous ECG or any notation of a murmur to see if there were signs early on. HCM can appear at any age - by the way how old are you?

                    Seeing the power of HCM makes me see things differently then many of you. Thus my fears for many - I will share a story that did NOT make the news - a 35 yr old man diagnosed nearly 5 yrs earlier with HCM and told to follow up in 5 years and not to worry about anything... went for a run one night and did not come home - his wife found him in an ER with no ID and labeled John Doe - ALIVE. A bystander saw him fall and an AED was close at hand. He stayed in a coma for several days and is now doing well with his ICD. He had never had a symptom prior to this event - he is a well conditioned athlete. THESE stories are not rare - they are simply not front page news and thereby we do not see them - so we think it does not happen. Unless of course you are here in the office all day and talk to the families and see the aftermath.

                    HCM is powerful - it must be respected and it must not stop you from LIVING your LIFE - within reason.

                    Oh boy Darren you really get to me with these posts - it is always good to talk about and it is always great to hear from new people about this issue.
                    Oh by the way with all the Eddy Curry coverage a few months ago a triathlete surfaced who had been told he had HCM - - then told NO it is athletes heart -- then his uncle was diagnosed with HCM - now he is re-diagnosed with HCM and looking at an ICD due to a family history of SD.

                    Sincerely.
                    Lisa Salberg
                    President of the I hate HCM Club oh and Pres of the HCMA too
                    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


                    • Lisa - thanks for the welcome. This looks a great site. I know there's a cardiomyopathy organisation in the UK, but they don't run forums like these unfortunately. Do you know of any other UK-ers registered with you?

                      I have recently reached the ripe old age of 40

                      I never had an ECG before a couple of months ago and I don't think a murmur has ever been detected before. My cardio told me I had no gradient. I must admit I'm so new to this I don't really know what that means but he seemed to think it was good news. I'm going back for another session to understand all the data much better.

                      About the guy who was told to go away and come back in five years: that seems a very unusual (not to say reckless) recommendation by a medic as I thought once you're diagnosed then regular assessment was an absolute must.

                      The Red Wing reference passed me by I'm afraid - we only deal in the currency of cricket and football (soccer) on this side of the pond

                      Comment


                      • As we all know hcm affects us all very differently. I am quite a challenging case even to Dr. M. Maron. If you just look at my stats a run of the mill cardio would shrug me off non-obstructed, 2.2mm septum, and 55 EF. As a matter-of-fact SSA and my Short term disability is using that to tell me I am not disabled and the local cardiac transplant center denied me as well based on my echo statistics.

                        Unfortunatly, I'm a ripe old age of 25 diagnosed at 21. I was in top health as well. In high school I was on seven different ROTC teams and third in command of my unit. I only had one symptom I could not run fast. But, I could spin a 13lb rifle like it was nothing and fifty military style pusups. It also was not abnormal for me to go to school and have to ride my bike ten miles one way back and forth to work the same day. To me this disease struck with a vengeance that I could have never been prepared for.

                        Now with that being said I still do exercise. Actually, the first thing Dr. M. Maron told me that if I feel like doing it do it. During the first meeting he recommened I get the AICD but he said until I get it that I should not live my life like I've got an anvil over my head about to drop and kill me. I asked both him and my local cardio and they were more than willing to assist me in getting an appropriate exercise program set up. What ended up doing was cardiac rehab so we could get good bases on my limits. I only had three limits 1. Don't go past max heart rate 2. No running to the point I could not carry on a conversation.3. No heavy anerobic weight lifting.

                        So, on a good day which Thank God I'm having more of right now. I will go shoot my b-ball nothing above a minor jog to retrieve my ball, typicaly around a five mile bike ride on flat pavement, or an hour of steady walking (these activities have been halted due to knee surgery but fully intend on picking them back up unless ortho recommends rehab first). When I'm doing these activities I have my hr monitor on and if it goes to high I stop and recover.

                        So, I agree that you cannot just stop your life because of this disease but don't push the odds too much either. Ultimately the decision is yours weigh the consequenses carefully.

                        Mary S.

                        PS Aunt Lisa if I got my blood drawn I'm sure it would be more gatoraid than blood!

                        Comment


                        • Re: Running...is it really all that bad?

                          Well, after reading what I have found to be one of the most exciting threads on the HCMA's message boards, I can't help but put in my two cents.

                          Let me start off by saying that this is my first post and I'm the one that Lisa was referring to above when she said:

                          "Oh by the way with all the Eddy Curry coverage a few months ago a triathlete surfaced who had been told he had HCM - - then told NO it is athletes heart -- then his uncle was diagnosed with HCM - now he is re-diagnosed with HCM and looking at an ICD due to a family history of SD"

                          I experienced an episode of syncope about a year ago and after having several tests done, a local cardiologist said I may have HCM and then after a few months with no other symptoms said I had athlete's heart. I was quite active in competitive mountain biking and adventure racing.

                          Since then I found out that an Uncle has HCM and I already knew of some sudden death in that same side of the family. Thanks to this website, I was able to get in touch with Lisa and after seeing my echo results, she was fairly certain I had HCM and referred me to a great electrophysiologist who has come to the same conclusion.

                          Just like several of the others, running and mountain biking are a huge part in my life. I even ran the Chicago Marathon in October. And now it appears that I will getting and ICD. I have mentioned my condition to some co-workers and they all think I'm crazy, saying things like "You're the last one in our department that we would expect to hear something like this from." Yet isn't that what stinks (to put it mildly) the most about this disease.

                          After it's all said and done, doesn't it just come down to the fact that no one with HCM should be pushing themselves to the extent required by competitive sports.

                          Of course we still need to keep our heart healthy. For some that may be walking up a flight of stairs or walking around the block once a day. For some that may be jogging a few miles. My adventure racing teammates are bugging me about continuing to race with them but knowing what I know now about the disease I can't. During a race, I would be too likely to push myself beyond my limits.

                          Like Lisa said, this disease doesn't just effect us. It effects our family and friends and so many others.

                          Comment


                          • Hi and welcome to the message board. I'm glad to hear your side of the story. I know everyone has to make their own decisions on what's right for them, but I agree with you. Although being active may be a big part of your life, it doesn't have to be all you live for. There is more than one way to remain active, just as there is more than one way to keep HCM from controlling your life. I appreciate your input here. Please continue to post in other areas too. I'd like to hear more from you.

                            Reenie
                            Reenie

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

                            Comment


                            • Welcome to the forum and to this thread! I look forward to your insights on this subject.

                              Originally posted by rbowman
                              After it's all said and done, doesn't it just come down to the fact that no one with HCM should be pushing themselves to the extent required by competitive sports.
                              Essentially I agree with the sentiments above although it has taken me a little while to get my head round this. I know that when it comes to a race situation I am not going to be able to trust myself not to push to the limit. However, the difficulty comes in understanding where the boundaries are. There doesn't seem to be a great deal of data to help you make an informed decision on activity levels.

                              For example I have seen postings on this board that say HCMers should not go over 110bpm. Darren says his runs normally see him around 150bpm. Just yesterday I was mountain biking and was a lot higher than that but not near race intensity.

                              As you say we all want to keep our heart healthy with an appropriate amount of exercise but how do you draw the line? I would love to be racing competitively next year but have to concede that that is unlikely now I have been diagnosed. However, I would still like to participate in events which many would call strenuous or participate in races but on different terms (i.e. when finishing is the goal and not racing to win).

                              I am not in denial about my condition - I just get the impression it is easy to default to a very conservative position when that may not be appropriate.

                              Comment


                              • Re: Running...is it really all that bad?

                                I think the reason we can't find data on what intensity level is acceptable is because it's impossible to tell. The 1 time I passed out (and an episode of passing out is one of the five risk factors for sudden death) was 10 minutes into a mountain bike ride and I basically wasn't even warmed up yet. The week before I had done a 5 hour adventure race with no problems.

                                I guess the only thing we can be certain of is that we don't need to get our heart in the red zone; and we both agree that is near impossible during a race. I also agree with you that being overly conservative can be even worse.

                                If nothing else, it's nice to know I'm not the only one wrestling with the same decisions.

                                Comment

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