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**Toogoofy317** · 03-13-2004, 10:16 AM

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

If you go to the thread Active Sports and HCM a recipe for disaster you will find a great discussion on the topic.

My HCM pretty much controls how active I am. Some days I can do anything an active 23 year old can do and other well I can't even get out of bed.

Each of us is different.

Mary S.

**Sarah** · 03-13-2004, 10:24 AM

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

Well, you already have an ICD and they are the most you can do for yourself in terms of preventing sudden death.

My feeling is do as much as you can when you can because you need to stay as healthy as possible b/c it may not always be this way.

take care,

s

**Burton Borrok** · 03-13-2004, 10:29 AM

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

Hi there Philly,
You tell an interesting story, and obviously you love sports, but you don’t mention some important information.

First, how many risk factors do you have for instant death? You’re right, an ICD is a good insurance policy, but are you making a claim against that insurance whenever you run? Do you knock off if and when symptoms occur, or do you try to ‘push through it’? Do you have a good HCM cardiologist? If not, get one. If so, he knows your case, what does he say?

What do you love more, Life or Sports? This is not as foolish as it sounds. I had a druggist who loved tennis. He had a heart attack and was told to stop playing, but claimed it was his whole life. It was – he died on the court shortly thereafter.

Actually, I’m not an alarmist, and running (within certain constraints) may be perfectly fine for you. I don’t know your circumstances or your case, and I’m not a doctor. I would however strongly suggest your getting the answers to these, and other, questions. If you get stumped on anything you can always post to these boards, or “Ask Lisa.”

Good luck in your upcoming run. As Spock used to say, ‘Live long and prosper’ - - or was it, ‘Live strong and perspire?’
Burt

Suggested reading – These Boards, and Heart Link Online (go to Home – Newsletter) particularly, New England Journal of Medicine : Sudden Death in Young Athletes in Volume 1, Issue 1

Risk factors:
1. Family members dying from sudden cardiac death.
2. Personal history of ventricular tachycardia/fibrillation.
3. Personal history of fainting.
4. Personal history of blood pressure falling instead of rising during stress test.
5. Septal measurement of 3+ cm.

**slettenca** · 03-13-2004, 10:39 AM

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

ok, so i got back about a half hour ago from the race.

i don't sprint like everyother jackrabbitt out there. i know my heart. i know my lungs.

it took me 28:47.865 to run 3 miles. i'm no pete fountaine!

my point being this: there has to be a middle ground for one to exercise. if you're body is apt to gain a lot of weight by not exercising...is that not bad for your heart! think about this, next time anyone reading this is around weights, pick up 65lbs and hold that around your waist. because, that's how much used to be around mine! 230 lbs, is way over doing it. but in my family, that's the way you're built unless you run! diet schmiet. my weight loss/gain is directly related to my activities.

then of course, if you run too fast...than the theory is you're more at risk to die. it seems a vast majority of people on this site, talk about competetive sports, but what is that really? are we talking about someone running 5 and 6 minute miles...i can do that, will i do that, not-a-chance! it would be stupid. but, come on, i just want to clear up that not all running, not all sports...softball, golf (walking), and even pick-up games of basketball are not all that bad. (i know i know, everyone is going to refer to either a 17 kid, {who never knew or was treated}, or they are going to refer to the infamous Len Bias, {who only just found out, and was not being actively treated, AND he was playing with PROFESSIONALS or friends that were trying their best to HANG with a professional)

Without my verapamil...I AM NOTHING! With it, i feel like i'm 9 again, and never knew i had a problem! so...is there anyone out there...you against, popular opion, that runs, or plays ball, or whatever? if not, i might have to rethink this thing.

**felixdacat** · 03-13-2004, 12:24 PM

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

First of all, it was Reggie Lewis who died suddenly of HCM, not Len Bias. Mr. Bias died of an OD of Cocaine.
Although you may have an excellent cardiologist, considering your lifestyle and your insistence in participating in risky behaviour, perhaps you should look into getting a full evaluation at one of the three HCM clinics. I see you're from Philly, so a quick trip up to New England Medical wouldn't be too bad.
If anyone can put you on an acceptable exercise program it would be these clinics.

**Toogoofy317** · 03-13-2004, 01:07 PM

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

Your absolutly right! NOT all exercises are bad and are recommened by many doctors. I walk a lot and I also bike. I was told what my target heart rate should not get past a certain number.

My Dr. rule of thumb is. "if you feel like doing it do it". He told me to apply that to most aspects of my life. If I push it that is when I get into trouble. They said I do have a bit more flexibility because of my AICD. But those do not give you the right to push it more. I don't know about you but having a horse kick me in the chest doesn't sound that pleasant to me.

I may not push it in exercising but my voulunteer job sometimes forces me to. If I have a rough EMT shift I feel it the next few days. There is nothing more draining to me than trying to lift a 300 lb person on a stretcher in the August heat. But this is where the moederation comes in being a volunteer in Florida I can pretty much do it when I want to. So if we have a really physically straining call when we get back to the station I can leave. Also, I have lots of trained medical personnel there so I feel pretty safe anyhow.

But I do know that this is not a job I can do full time so I don't pursue that path. Although, it is something I would have loved to do. I have found other professions without the extreme tempretures and less lifting while helping people.

Mary S.

**Burton Borrok** · 03-13-2004, 03:49 PM

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

Here’s a good rule of thumb –
Too smart is dumb.

I guess we should all try to get into the best physical shape we can maintain. If that includes running, jumping, scaling tall buildings, lifting cars, whatever – well that’s fine. But we have to know when to knock off too. Symptoms are nature’s way of saying “You’re overdoing it – take a breather.” Death is nature’s way of saying, “Stop completely – you’ve overdone it for the last time.”

If it feels good, it probably is. If it hurts, it’s bad. Wish I could run the way you did. Some days walking to the car is as good as it gets.
Burt

**Darren1** · 03-15-2004, 01:10 AM

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

I just got back from a 6 mi. run and sat down to read your post. Thanks for the post!! I love it! I started the "Active sports and HCM... A recipe for disaster?" Thread.

I too am a sports lover. Like you, I'm pretty cynical about how much the medical community "knows" about our disease. I've yet to see any good statistics about mortality rates and exercise/sports/etc. I do know that it would be irresponsible for me to get too crazy with my sports habits, but then how do I know if I'm pushing it too far? You've probably been told already "watch for symptoms"... well, guess what the symptoms are? Shortness of breath, lightheadedness, heart palpitations, fatigue. Last I checked, EVERYONE that participates in any sport that requires some exertion experiences those (walking fast, jogging, ping pong, sex, even public speaking!).

Someone once told my wife that I seemed to be "in denial". I am fully aware that I could drop dead at any moment... I'm also aware that SOME doctors feel that extreme physical exertion may exasterbate the condition (again, from what empirical evidence they make this claim, I have no idea). I watch for symptoms (though from what I have read, the symptom that most people see is their first and LAST symptom... DEATH), I don't push myself 100%, I get checked 2 times a year to have the current status of my HCM evaluated, I have taken a stress test... etc (all were perfectly clear, no obstruction and no irregulatities.. and yes, I ran while wearing the halter monitor).

What is unfortunate to me is that so many medical professionals tell folks with HCM not to exercise, or not to exert themselves. Why? If you don't get your heart rate moving, then you are letting your heart deteriorate and lose it's strength. Is it possible that I'd be dead already if I hadn't been keeping myself in shape over the years? (I would LOVE to see some cold hard stats. to show me how people with active lifestyles do with HCM compared with those that are sedentary. ). How can it be assumed that an out of shape heart with HCM is "better/safer" than an in shape heart? Yes, one that doesn't exercise and then takes up sprinting 10 miles every morning without building up to it is asking for trouble (but wouldn't a "normal" healthy person also be asking for trouble if they did that?). I said in one of my other posts on the board that we all have a fatal illness (life). As a human being, athlete, HCMer I know that I need to be responsible with my illness (not just life, the HCM illness). I also know that I need to be careful not to overreact to advice that is given without statistics/evidence to support it. Either extreme would be dangerous to my future. One stifles it, the other risks ending it.

Anyway, sorry to rant on and on. Keep on posting! If anyone knows sources for some statistical info about HCM I'd love to see them.

-Darren

**Laoshur** · 03-15-2004, 07:37 AM

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

I just have to write something in defense of all us HCM couch potatoes. I am glad that you who are writing about exercising are able to do all these things and that you can enjoy them. I, like many others here do not have this luxury.

Even though I was just diagnosed eight months ago, in some way I have known that something was wrong for thirty years. At that time I thought that everyone should jog. So nearly every night after supper my husband and I went jogging and every night I had left side chest, shoulder and arm pain. My husband pestered me to find out why so, I had a stress test and was told I was out of shape and overweight (I weighed 140 pounds and am 5 feet 7). I was so discouraged that I completely gave up and gained fifty pounds and seldom exercised.

About eleven years ago I began having trouble with climbing stairs. Again I went for a stress test, but the doc found nothing significant. So, about five years ago I joined a gym where I constantly blamed myself because no matter how hard or long I worked out, I never got better able to do aerobic exercise. When the monitors on the equipment showed that my heart rate decreased sharply the more I pushed, I blamed the equipment. I constantly told my daughter that this or that treadmill was broken with respect to its pulse monitor because it showed a sharp drop (often 80 bpm in about 30 seconds). When I heard my heart stop and then fainted on the crunch bench, I went to my GP, who decided I had some heart problems and sent me to a cardiologist. But when he said that the problems were not life threatening, I went back to the gym.

And so, when I got the chance to move to Beijing and fulfill a lifelong dream of teaching in another country, I took it. Now I am here sitting on this couch having arrhythmias and feeling faint because I had the audacity to think that I could walk out of our apartment complex and across the street and eat at a restaurant and then walk back. My life revolves around figuring out what I can do and when so that I do not run out of energy (or life) before or during a class. I am proud to say that I have not missed a class except for two that my husband taught for me when I had pneumonia and congestive heart failure. I am proud that I plan to feed meals to dozens of students this week at four parties - three of them at our apartment, and that I plan to house and entertain friends from America this weekend and do all of this and still attempt to be the best teacher these students have ever had. Somehow I suspect that that is more than enough exercise for me!

I guess what this is, is a rant. I apologize. I realize that those of you who are writing about the joys and advantages of exercise are not trying to make the rest of us feel guilty, but for someone like myself, it has this effect. I find myself thinking, "Why didn't I persist in running thirty years ago. Maybe then I would not be so bad today." Well, I am sure that gaining weight and becoming a couch potato was not the answer, but I also know that making us feel like failures for not exercising, is not the answer either.

Please forgive me if I stepped on anyone's toes. This has been a bad day because I found out that my neice went to a cardiologist who told her that he doubted that our family had HCM. Now, mind you, he has never seen any of us. He has never seen any of our records. My neice has not yet had an echo or any tests for him to look at. The doc has never lived through the cardiac deaths of all of my mother's family, three sudden, including my mother. He has no data whatsoever, just his own prejudice. So, my tolerance for people who assume that everything is your own fault is VERY low today.

Thanks for listening!
Rhoda

**Toogoofy317** · 03-15-2004, 08:33 AM

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

Rhoda,
I know exactly how you feel. When I was in high school I was in ROTC I had to bust my hind in to stay in shape. But one thing, it did not matter how hard I tried I could never keep up with the other cadets in the mile run. I would always get in trouble by my instructor because I was lazy. Because, I couldn't finish I got to do another mile. It even continued after school. Before my team practice I had to go do the mile. Mind you I could do everything else I had beaten all the other girls my age in every other physical aspect. I could do 50 military style push-ups, for a female that is a pretty good number.

This also caused me not to graduate with honors in high school. I took phys ed my senior year and my teacher dropped me two letter grades because I could not run fast enough.

So four years later I was told I had HCM and was very lucky I didn't drop dead on the track or drill field. I had four risk factors and so I received an AICD.

It may be awhile before hard evidence is posted because of how hcm manifests itself. Since, the doctors don't know for sure they have to tell you no competive sports because of liability reasons. If a significant number of people have died from a certain event then it would be neglect on their part and the lawyers would have a field day. Also, many hcmers do not even know they have this disease and they never get treated for it that skews the numbers in just about all studies.

Just my two cents,

Mary S.

**Pam Alexson** · 03-15-2004, 10:11 AM

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

Mary and Rhoda thank you for writing your stories . This 50+ females life could have been excerpted out of each of your stories. I don't think the intention is to hurt or insult us but I do believe we feel this way anyhow when so much of our lives have been changed and curtailed by the disease and how we are each uniquely effected. I do believe that as time advances the disease as some of us have found does indeed change and yes unfortunately we too may deteriorate and lose even more. I think the sudden death part as it is not clearly understood why some suddenly die and others do not has many factors that have not been well studied. My personal opinion is that we become wiser and safer , more intuitive about our own responses to activities and how they effected us in the past and how they may result in deleterious effects now. I sometimes say "for the grace of god I am still here and part of a bigger plan." I know we are not privy to when we die or how but knowing I have this disease and finding safe parameters to live in has certainly not hurt my odds of surviving sudden death. I am reminded of the many close calls I was given with this disease and am thankfull that none resulted in my death. Yes most all of my close calls were brought on by my pushing the ballot and following peer pressure to work harder or my stupid Dr. telling me I did not have a problem , causing me to continue to take risks and push that ballot once again. Now if my life activities had been a game called Russian Roulette and it was played as it is intended with a loaded chamber of bullets minus the one, then each and every time I survived may have certainly been my last. I am thankfull that I stopped the risky living before the cylinder spun it's last spin. That my friends is what I feel has a lot to do with surviving or not . Clearly the trade offs are not so glamorous in society's image but they are glamorous because we savor everyday we have our survival and every accomplishment we make however small they may seem. THEY ARE LARGE TO US. As an aside I have been faithfull in reading all the stories on this board and you Mary and Rhoda certainly do not fit in any definition of couch potatoe that I know of. It's how we view ourselves not as others view us that is imprtant . When my son says "are we poor mom?" I say, " son it depends on your opinion of what poor is. " He says, "we're rich then. " Revel in the life you have and the spirit in which you live it. Pam

**Burton Borrok** · 03-15-2004, 10:24 AM

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

I had a brother-in-law who had a heart attack after he retired from the Air Corps. They asked him if he wished to participate in a study, which he did. One group was given aspirin daily, and his group was given aerobic exercise four days a week instead. He, and most of his group are gone now, so I guess they once again proved that aspirin is good for heart patients. If they ever want to study exercise in HCM patients, thank you very much, but I’ll pass.

On the other hand, my cardiologist asked me to enroll in a cardiac rehabilitation class at the local hospital. He wanted me to be in the best physical condition possible. At the orientation, when they looked at the list of my maladies and past medical history, they said that exercise equipment of all types (treadmill, bike, etc.) were out of the question. Instead, my goal was to be three repetitions of walking slowly for ten minutes, and resting between repetitions. I was also to stop immediately if any symptoms occurred. I decided that most days I could pretty well do that now, and I didn’t need a co-pay of sixty dollars a week to do it with an EKG transmitter hooked up to me.

We each have to choose our own path in life. Exercise is good, death is not. Somewhere there must be a happy medium for each of us. But watch out for that down side – I hear it’s a killer.
Burt

**Pam Alexson** · 03-15-2004, 10:45 AM

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

I needed to post again on this subject as I had an idea come to me . Do you think it would be a good or bad idea to have a section on this board where we could go just to express our sadness as it comes up or grief as related to the disease or would this be too big a can of worms for any bird or birds to handle? Just a thought as while reading this particular post , I found myself revisiting sadder times when I first had to accept that my style of living had to change and remembering that in denial I thought I could overcome this and life would be the way it used to or I'd make it even better. I think many of our newly diagnosed posters may find comfort and support in a safe area. It might require a special monitoring and a higher degree of sensitivity. I think a lot of this is handled by Lisa and Kelly by phone but I can see where a few deputised veterans could help them out if need be. Or maybe it would be just Lisa saying in PM ,"so and so could you PM so and so about this particular problem?" Well any way just a thought. Pam

**slettenca** · 03-15-2004, 12:08 PM

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

This is the type of information that I wanted! I appreciate all of you that are contributing to this thread.

Darren, really hit it on the head for me. It hasn't been only since I had an ICD put in, that I really noticed my affliction. I mean, I knew the symptoms, I know the pain, the shortness of breath, yadda, yadda, yadda,...but I never thought about death. DEATH?

Ok, death is a possiblity. Matter-of-fact it WILL happen. But WHEN? What are the statistical age-brackets? After that, break that down into 'Active and Non-Active' people? Break it down into 'Smokers', 'Drinkers', 'Marijuana', 'Marathon Runners'...I want some sort of table to look at and am unware of. Short of hiring my own actuary I don't know how to come up with this info.

So, DEATH. It will happen. WHEN?

Going up the stairs,
Kayaking the Schukyll
Running in a race
Perhaps standing in line
waiting for someone to check me out in the grocery store
at the DMV
the six flags on the biggest rollercoaster they HAVE
to get a hot dog at a Phillies game
(equiv.) sitting in traffic
-uh oh...perhaps while I'm going 80 down the NJ turnpike!
In the shower
Or perhaps if I get mugged
or if some dolt trys to answer her cell phone, while spilling her coffee and inadvertantly veers in to the left lane, while i'm doing 80 down the NJ turnpike!
maybe if my wife forgets to blow out her candles and our house catches on fire
if i'm out standing in line, at a bank, and someone come in a lights the place up
better yet, i'm in the POST office and some nut comes in

POINT IS, sudden death is SUDDEN DEATH. How can I WASTE the time I do have NOT enjoying life. If I just worry about it then I am WASTING space. Sort like (using this as a comparason for non-xtian folk) Jesus' parable about the fig tree. If it bears no fruit after a year...tear it from the ground! Why let a rotting tree deplete the soil of nutrients?

WHY WASTE PRECIOUS TIME wallowing in the enevitable. I can't think about PREVENTING sudden death, when I don't know WHEN sudden death is going to occur. So perhaps, and I know I'm not alone, I can enjoy my life.

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