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Sudden Death.. Scary but important to discuss..

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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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  • Sudden Death.. Scary but important to discuss..

    After reading multiple threads, I think it is important that we discuss the topic of sudden death once again (No, I'm not obssessed with sudden death. I'll explain why it's important to me at the end of this post.)

    Let's start with some things I've read (here and elsewhere):

    While more people with HCM die of sudden death than non-HCM folks, this number is still a small % of all deaths even in people with HCM.

    Sudden death is often the result of physical activity.

    The death could have been prevented.

    Now, some questions:

    1. I have personally read about many cases of sudden death. I also know of two people that are in my circle of friends who lost loved ones to sudden death. I don't see a correlation between the physical activity and the sudden death.. Of course if someone is active and dies on a sports field (especially a PRO sports field), it will get noticed. What about the people who die on their couch (one of the two sudden death incidents I have personal knowledge of) or in bed (the second). One victim was athletic, the other was not.

    So, Is there a direct correlation between physical activity and increased likelyhood of sudden death? If so, where are the stats.? Yes, the ones that make the headlines are the pro-athletes and the H.S. students that die on the field.. but what about the others? I imagine that if a student goes to the nurse not feeling well, and dies of a heart problem, that doesn't get equal news copy.

    2. If sudden death is related to physical activity (especially heightened heart-rate and sudden start/stop exercise), why do so many sudden death cases occur while the athlete is NOT being active? Yes, I realize the heart may have been further enlarged during exercise, but is a larger more conditioned heart worse than a (slightly) smaller but still enlarged and unconditioned one?.

    3. Is sudden death something that can be prevented? Maybe with an ICD, diet, exercise (or moderate exercise), stress reduction and/or medication.

    ----------------------------------------------------------------------------------------------------

    Why do I keep bring up this issue? Because I am regularly seeing posts and news reports that in my opinion mislead. Should people with HCM be cautious? Yes. Should we stop participating? Not unless there is strong evidence to show we should. Of course, physical symptoms, abnormal EKG, etc.. would indicate that the person has more to worry about. If a person with HCM has taken a treadmill test, has no prior family history of death from sudden death while being active, etc.. then why should/would they slow down? The most popular threads here at 4hcm are all about athletics and HCM, so I know this issue is "close to the hearts" of many. Do I plan to stop bringing this up? Only if I see hard empirical evidence or a more balanced view of this topic. I assume that those who feel being athletic with HCM is dangerous are not going to stop saying so...

  • #2
    Re: Sudden Death.. Scary but important to discuss..

    Darren,

    I can only assume that you are refering to the Report Sudden Deaths thread on the board. My understanding of this is that Lisa is collecting these data for research purposes only, and not to present any sort of opinion or scare tactic. If i am incorrect in this assumption, then i hope that Lisa will clear this up so i can remove the posts that i have made there.

    Of course the football players and olympic swimmers are going to get the most media attention. "Area Man Suffers Cardiac Death While Sitting on Toilet" just doesn't make interesting reading. My dad had his sudden death while getting out of bed, and he was not particularly athletic either. This was the first post i made under that topic.

    I think the main problem that we are having here is that you are trying to make broad generalizations about HCM and athletics. The majority of HCM'ers out there are not at all like you, Darren. We have symptoms, we take meds, we have arrhythmias, we've felt our hearts stop beating and wondered if they were going to start again, we've had electricity pumped through our bodies, we've had sons and daughters and other family members die in front of us from this disease. If this makes us a little nervous about running in a marathon, then i think it is justifiable wouldn't you say? You lack a perspective that just about everyone else here possesses.

    Jim
    "Some days you're the dog... some days you're the hydrant."

    Comment


    • #3
      Re: Sudden Death.. Scary but important to discuss..

      Hey Darren,
      I see what you’re getting at, and I will comment, but first let me address your search for “hard empirical evidence.”

      It would be great if we could say things like 47.685 people will die of sudden death causes while participating in, or soon after, hard physical activity, while only 24.829 people will die of sudden death while remaining inactive, in the same specific time period. The problem is, life just ain’t like that. Many people I’m sure perform hard physical activity and drop dead after would, but are never identified as sudden death victims. (I’m thinking away from the playing field.) – Such as a man digging in his garden then going to bed because he feels ‘funny.’ Next morning he is found dead, and the doctor indicates ‘natural causes,’ or it gets classified as ‘suffered sudden death while inactive.’ It’s just not a neat situation where the classifications and causes are that simple to identify or classify.

      That leaves us with deductive answers to our questions, and we apply common sense. We know physical activity stresses the heart in everybody – to the extent of the activity. (They use stress tests to determine how well a heart handles it, and how far that person can go – in relative safety.) Common sense indicates, and what little data we have supports the concept, that an over stressed heart is more apt to quit then one that is not over stressed. Sometimes this happens at the time of stress, and sometimes it happens a few hours later, presumably because the heart has tried to recover from the stress – and doesn’t make it.

      Conversely, a heart that is only seldom stressed atrophies to the point that it can no longer handle any stress, and yawning might be enough to cause it to stop. (Your heart is a muscle, and like all muscles, if unused it looses strength.)

      So here we are, trying to find the right amount of exercise for each individual so they will be all they can be, - and not dead. It is not an exact science – heck, we don’t even know how much stress a person is under not counting physical activity – and the amount can fluctuate greatly over a rather short period of time. Doctors use stress tests to help them make their determination (their best guess) and we use the appearance of symptoms (our best guess.)

      We know mental stress is a factor, but I wonder how many people think, “I’m worrying about ____, - I’d better not exercise to heavily today.”
      Burt

      Comment


      • #4
        Re: Sudden Death.. Scary but important to discuss..

        As far as "hard empirical evidence," please refer to Dr Barry Maron's published works on this. I don't have the reference but I attended the meeting in NJ the last 2 years and this topic was touched on both years with statistics to back it up.

        As far as our site giving misleading information, we strive to give the most factual information possible. We have the experts looking over our shoulders here every week, sometimes daily. They know what we say here and they advise Lisa if we are giving erroneous information. I'm going to go out on a limb and say that you are the one disbursing misleading information. You want everyone to be symptom free and go out running daily like you do if they want to. The fact is that many here came here in the first place because they do have symptoms that prompted them to do more research.

        You are free to live your life as you see fit. So are others. We advise them to check with their doctors and come up with a plan that works for them while telling them that strenuous exercise is usually prohibited. Everyone is responsible for their own lives. If a person pushes it daily, knowing that it may cause complications, then they and their families deal with it if there are adverse effects. If there are none, more power to them.

        Reenie
        Reenie

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

        Comment


        • #5
          Re: Sudden Death.. Scary but important to discuss..

          Darren –

          I believe there is an error in your very first statement:

          Originally posted by Celtic
          While more people with HCM die of sudden death than non-HCM folks, this number is still a small % of all deaths even in people with HCM.
          Dr. Barry Maron’s article published in the NEJM says that out of 387 cases of sudden death in young athletes (cases which he researched) – 102 of them or 26% had Hypertrophic Cardiomyopathy. In that same article he also mentions that about 2% of them had normal cardiac structure at autopsy.

          I don’t believe it has ever been written that more people with HCM die of sudden death than non-HCM folks.

          Much of my recent reading has been about Congestive Heart Failure. I’m 50 years old and was hospitalized in May with CHF. The resulting care and tests that I have undergone led to my diagnosis of HCM. It so happens that CHF is reaching epidemic proportions in this country as baby boomers age – estimated at up to ½ million cases each year. Sudden death is also a complication of Congestive Heart Failure. I don’t know what the numbers are, but I bet that sudden death by CHF is higher than HCM.

          I think what needs to be understood is that sudden death is usually the result of ventricular tachycardia – a heart rhythm problem. Individuals that are prone to V-tach belong to one group that probably should consider an ICD. A fatal v-tach episode could occur at anytime and might be the result of physical exertion or might not.
          • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
          • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
          • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
          • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
          • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
          • 2011: Brigham & Women’s - Medtronic ICD implant

          Comment


          • #6
            Re: Sudden Death.. Scary but important to discuss..

            Boz,
            You brought up an interesting point . When considering the sudden death rates there is always the consideration that death occurred as a result of say for instance CHF. Now in the case of CHF ; a broarder category of heart disease that occurs as a result of ongoing damage to the individuals heart , we can make some projections that some of those very individuals who succumbed to CHF were individuals with undiagnosed HCM. As I had 2 cousins , a grandfather and other relatives who died as a result of "cardiomyopathy", I think it would be fair to make a point that they had undiagnosed HCM. To note none of these individuals had a report or a history of CAD or any other heart disease that may have evolved into a worsened condition . These individuals and my self actually all were very active physically and athletic. We did have episodes of syncope that were always unexplained especially when we pushed it.
            Had I not gotten out of the very same circle of mis-diagnosing doctors, that we all shared, I may have been added to that list of SCD's. I was certainly well into CHF before anyone had a clue that I had HCM and I was still pushing it as advised to do so by my former physcian.
            Currently there is no 100% accurate way to get all the numbers and there is under reporting that will continue until the rest of the world is fully educated.
            So back to you Darren, I think the facts are the facts and you or anyone else could safely say that the numbers will always be under reported as related to sudden death due to HCM and in those who are very active.
            Have a good day all.
            pam
            Dx @ 47 with HOCM & HF:11/00
            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
            Lead failure,replaced 12/06.
            SF lead recall:07,extracted leads and new device 2012
            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
            Genetic mutation 4/09, mother(d), brother, son, gene+
            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

            Comment


            • #7
              Re: Sudden Death.. Scary but important to discuss..

              Hey folks,
              You have to realize that Darren is basically symptom free and is willing to risk everything on a good time or two. We on the other hand have some intimate knowledge of the down side of this disease, and are shocked by the risks he is taking – but they are his risks to take.

              I get concerned, not too much by what he does, but as the example he is projecting for others to try to emulate. That could lead to disaster for other people. If I recall correctly, he is now advising others to get their cardiologist’s permission before doing any strenuous exercise, - and that is at least one step in the right direction.

              It’s all a matter of limitations by the disease, and by the risks you are willing to take. I once had a druggist who loved to play tennis. His cardiologist told him to quit but he enjoyed the game more then anything. He died a happy man – on the tennis court. That was one he couldn’t return. Game, set, and death.
              Burt

              Comment


              • #8
                Re: Sudden Death.. Scary but important to discuss..

                Pam

                I agree we will never know exactly the numbers of sudden death we can't but when you have sudden death in your family it is very important you heed to your doctors advise, running because you feel you can is suicidal in my eyes if you have anyone that has died from SCD, i'm not saying sit on your behind and do nothing that isn't good for you either, but running a marathon is a nono, or contact sports, or doing exercise to the point of exhaustion, i mean we all have rights but you have to break that down to your personal safety if you are running an even more risk of sudden cardiac death then why do it and take that chance, i mean i try to walk and swim which are the 2 best cardiac workouts you can get but when i start aching i stop and i rest, everyone take care

                Shirley
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                Comment


                • #9
                  Re: Sudden Death.. Scary but important to discuss..

                  "You have to realize that Darren is basically symptom free and is willing to risk everything on a good time or two. We on the other hand have some intimate knowledge of the down side of this disease, and are shocked by the risks he is taking – but they are his risks to take. " -Burton B

                  I'm not really willing to risk everything on a good time or two, but Burton is right that I have no symptoms and my perspective would likely be different if I did. I guess that since most of the people posting on this board are the more "severe" cases of HCM, that this may not be an appropriate audience. Though I don't know where I could find a "balanced" audience of people with HCM in all stages. In life, the real (guaranteed) risk is to not live life to it's fullest, then you will not really "live" life no matter how many years you are on the planet.

                  Comment


                  • #10
                    Re: Sudden Death.. Scary but important to discuss..

                    "Dr. Barry Maron’s article published in the NEJM says that out of 387 cases of sudden death in young athletes (cases which he researched) – 102 of them or 26% had Hypertrophic Cardiomyopathy. In that same article he also mentions that about 2% of them had normal cardiac structure at autopsy. " -Boz

                    Yes, this is exactly my point. 3/4 of all sudden deaths in young athletes are the result of something other than HCM. Doesn't this tell us that athletes without HCM are more likely to have a sudden death experience? (1 in 4 with HCM, vs. 3 in 4 without HCM). With a diagnosis of most other forms of heart disease, comes the recommendation to increase aerobic activity and strengthen the heart (no, not to go climb everest of run marathons). With HCM, it is recommended that aerobic activity be decreased.

                    ----------------------------------------------------------------------------------
                    BTW, where in Quincy? My Aunt lived on Tremont Street for years.

                    Comment


                    • #11
                      Re: Sudden Death.. Scary but important to discuss..

                      "As far as "hard empirical evidence," please refer to Dr Barry Maron's published works on this. I don't have the reference but I attended the meeting in NJ the last 2 years and this topic was touched on both years with statistics to back it up. "- Reenie

                      Reenie,

                      Yes this site tends to lean toward discouraging physical activity for people with HCM (which may or may not be good advice). I was not referring to the area to post HCM related deaths (though It too seems to focus on sports related deaths). I was referring to the media, and most other HCM newsgroups I have seen/read. Lisa does a great job maintaining the site and encourages discussion. I am not trying to attack Lisa or the HCMA, please don't take it that way. Perhaps Lisa and/or the HCMA are fearful of giving less cautious advice ("better to err on the safe side"), with today's "blame everyone else for my choices" attitude and the vast number of lawyers eager to jump at the opportunity to bring on lawsuits, I can understand. It is still better to give all the information (both sides) and let the individual decide ("Knowledge is power!"). Anyone that visits this site and hasn't had their doctor discuss the possibility of sudden death with them is either seeing the wrong doctor, just diagnosed with the disease or does not have the disease. To be balanced, we should at look at the both sides of the sudden death issue with relatively equal attention.

                      Comment


                      • #12
                        Re: Sudden Death.. Scary but important to discuss..

                        Darren,

                        You do make a good point about your target audience. I guess this holds true for any online forum, whether it be for HCM or fixing your computer... the people who use them are the people who are experiencing problems. Everyone else is out happily living their lives and not worrying about it too much.

                        As far as aerobic exercise is concerned, to my knowledge this has never been prohibited across the board for HCM'ers. The information provided at the Cleveland Clinic website concerning exercise states that... Most patients with HCM are able to do noncompetitive aerobic exercise. I think the key here is noncompetitive. I've never known of any restrictions to aerobic exercise in general, and would be interested in learning where you got that information. The site goes on to say that any exercise program undertaken by an HCM'er should be discussed with your doctor, which is of course good advice.

                        Jim
                        "Some days you're the dog... some days you're the hydrant."

                        Comment


                        • #13
                          Re: Sudden Death.. Scary but important to discuss..

                          Darren,
                          I am also fairly free of symptoms. I have a little chest pain and SOB every now and then but not enough for me to notice before I knew I had HCM. I saw a specialist in May and was told that I could and should continue to excercise. I was advised against going out and playing competetive sports but if I want to go for a walk or a jog that is ok. The important thing is that if I want to go run 2 miles I slowly work my way up to it and not go try it out of the blue. I do beleive that for those of us who are not limited by symptoms, it is tough to swallow that we have limits. Unfortunaltely we do. Do you see an HCM specialist. That would be the best person to tell you exactly what is right for you because he/she would know all of your medical facts.

                          Personally most of my excercise comes from chasing my wide open 2 year old and I wouldnt have it any other way . When I feel like I am overdoing it I simply go sit down. For me knowing about my HCM means knowing not to over do it, not dont do it at all.

                          I am sure there are probably alot of people who come here to read and not post. Any question you have, may be the same question someone else has. The more we discuss, the more others learn.
                          2.6 Septal Measurement
                          ICD Aug 2010 (pushed into it over 6 abnormal beats...hate it!!!)
                          "I would rather have thirty minutes of wonderful than a lifetime of nothing special"
                          ~Steel Magnolia's~

                          Comment


                          • #14
                            Re: Sudden Death.. Scary but important to discuss..

                            Darren, you have to understand. Most people who seek out the HCMA are here because they have real problems. We have people here who are looking at possible heart transplants. We have those who just feel horrible. Then we have some who are able to get on with their lives, either because they aren't too bad off or because they've had surgical intervention that helped them regain quality of life.

                            When you're on the soapbox about how the HCMA should be telling HCM'ers to do whatever they feel like doing, there are those who can't go out and mow their lawns or wash their dishes. We try to have a little compassion here.

                            Our stand is to have the patient coordinate with their doctors and find a plan that fits them best. If you want to run a marathon and feel like it, and your doctor says ok, then by all means do it. However, I think you're going to find it hard to find many specialists who say marathons are a great idea. Cardiologists may think so, but few specialists will agree.

                            Many of the people here will get the advice that walking, biking, and other activities that aren't too strenuous are the best way to proceed. Heavy lifting, running, and soccer are probably going to be discouraged. It's a strain on an already taxed heart. If you don't agree, that is your perogative. Live your life. Have fun.

                            Reenie
                            Reenie

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

                            Comment


                            • #15
                              Re: Sudden Death.. Scary but important to discuss..

                              Well

                              I have a problem with people thinking just because you have mild symptoms or none you are at a lower risk of sudden cardiac death because this is just not true....My brother was diagnosed with a mild case worked for years and dropped dead in his car 8 years later


                              It is just that everyone is different, there are some that are still working some that have trouble getting from one room to the other, but it doesn't mean the ones that work are going to live longer .... they run the same risk as the ones that can't walk from one room to the other

                              This is just from my experience and my family, and from other articles i have read, i hope you live a long and happy life.

                              Shirley
                              Diagnosed 2003
                              Myectomy 2-23-2004
                              Husband: Ken
                              Son: John diagnosed 2004
                              Daughter: Janet (free of HCM)

                              Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                              Comment

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