Running...is it really all that bad?

[armstrong]

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

Classic thread. I'm compelled to add my $0.02.

After being a basketball-aholic for a good portion of my childhood, I was diagnosed with HCM some 16 years ago, and spent about 15 of those years being a sedentary loaf. My new cardiologist has told me that exercise is okay, and even gave me the okay for afternoon pick-up games of hoop where I work. I'm pretty lame on the court nowadays, which is highly depressing considering I used to be speedy. Oh well. I think it feels better to be as active as possible, rather than avoiding all forms of physical activity. I'm trying to set realistic goals for myself, and be accepting of the fact that I will normally be the slowest player in the game (even though I'm one of the thinner and younger guys. @#$%!). I still pray for my HCM to undergo a miraculous "spontaneous remission". It really is hard getting through this fifth stage of grief: Acceptance.

[JohnP]

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

Excellent thread.

I came across this on another site that strikes a chord with me.

As marathoning cardiology expert Paul Thompson, M.D., once wryly put it: "If your only goal is to survive the next 60 minutes of your life, then your best strategy is to go to bed... alone. However, if you want to lower your lifetime risk of heart disease, then your best strategy is to fill the next hour with 60 minutes of moderate exercise."

Such an irony, since my HCM diagnosis, I've done dozens of running and triathlon races and hundreds and hundreds of intense workouts. Knock on wood, but I have never had the ICD go off, let alone a cardiac event, during strenuous exercise.

What I find curious - we as a species did not evolve to be conditioned for many of the jobs we have today - like mine, all day sitting in front of a computer screen, stressing out as the phone rings off the hook and financial data streams across the screen. Funny, I DID have a cardiac event at my desk.

Yes, I accept the fact that strenuous exercise, under the "right" circumstances, CAN trigger an event. But I also know for me, NOT exercising (at least moderate exercise), WILL result in health problems for me at some point down the road. Been there. I don't want to go back to my former weight and cholesterol level.
I've had long discussions with my cardiologists and EP. For me, its a matter of finding that balance.

[mandksiders]

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

I've read all of these responses with great interest. I was running about 5 miles a day and doing aerobics on a 16 inch step before my diagnosis and had all intentions to start training for half-marathons. Then my diagnosis occurred and I stopped running. I jog now about 4 miles a day and lift light weights. I also have an ICD as well. I stopped running, because quite frankly I don't want to risk leaving my family doing something I was told not to by a top HCM specialist in the country. I know I could die walking across the room, but at least I will not leave my family doing something that I was told could kill me. In addition, from the information I have researched and from talking to specialists, I realize that exercise such as running could do damage to my HCM heart in the long run and in the long run, I want to keep my heart as healthy as possible, so if that means giving up running to avoid damage to it, then so be it. I am still active and jog (slowly), lift light weights and walk as well. If me changing my exercise routine and giving up something that I had come to love (running) will keep me around here longer and keep my heart from having a ton of wear and tear on it, then I will do whatever it takes to stay here with my young children and my hubby.

[Pam Alexson]

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

Very well said Kaye.. Said with intelligence and knowledge learned to support your statement .

Learning that we have HCM is one aspect of beginning a livelong journey with a disease that arises from a vital but abnormal muscle and this is not easy in so many ways. Accepting with the knowledge learned, based on research and data from our experts, we learn about how we could best live life with activity in our individual lives ... yet another aspect of moving along in our lifelong journey with HCM.
The balance is there and we need to adapt; some of us struggle more then others with this step,but in order to preserve life and maintain some quality and move forward healthily for ourselves, our loved ones and for our researchers, we must accept what HCM is and master the adaptation part. For the bulk of us it should equate to survival to full life expectancy.

Absolutely how we get( what shape it is) to that life expectancy statistic may well be in our own hands and how we have moved forward and adapted to fact based limits suggested to us by our experts.

[Pattie]

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

I have what I believe to be a mild form of HCM. I run almost daily (ran 8 miles yesterday) and signed up for the Chicago half marathon on Aug. 2nd. My doctor's are okay with it as long as I don't push it and I keep my heart rate at reasonable rate....I don't run at a fast pace. I don't have an ICD, but take 100 mg of toprol XL daily. I did pass out while running two years ago, but haven't had any problems since then.

[gfox42]

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

Pattie,
I can't tell you whether running is a good idea for you or not, and I don't mean to rain on your parade . . . But I don't think I'd place a lot of confidence in having "a mild form of HCM." You may have mild symptoms, and if so, that's great, but they're no guarantee that you won't have more problems down the line. That would be true regardless of how much exercise you were getting; intense exercise can actually make it more likely that you'll have such problems.

Here's hoping that doesn't happen! In the meanwhile, you still have to make choices about exercise, which I know isn't an easy process.

Gordon

[Helen L]

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

I have never been very active, yet I do wonder if I had kept going at my normally slow pace, as my body dictated would I be healthier. I, like Ilan2000,listened to my GP after I was diagnoised in the 80's not to lift more than 20 lbs.and things like that, I often think I made myself weak by lack of exercise, or was I that weak anyway? I now struggle with telling my kids to be careful, slow down, as I do not want to make them weaker than they need be. Yet at the same time I sure do hope they out live me . I know the struggle that the new diaganoisis brings. Even though I never liked to play tennis, or anything I mourned the fact that I had lost the option. It is much different If you don't want to or if you can't.
I have many family members with HCM, I did everything with meds and exercise I was told, my sister was always told she did'nt have it she went skiing and kept active, we had myectomies with-in two years of each other other. So who knows!
Another sister says she has a mild case of HCM. I do believe that is like being "a little pregnant"!
I also see Celtic, you refer to two friends that were active but died on the couch, in our family it has seemed that heavy exercise, work or play doesn't have an immediate affect but hours later can be really bad. I know I always had to pace myself because if I do this (even shopping) this day I won't be able to do anything the next.
Thanks for an interesting discussion.
Hel

[mtlieb]

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

I have what I believe to be a mild form of HCM. I run almost daily (ran 8 miles yesterday) and signed up for the Chicago half marathon on Aug. 2nd. My doctor's are okay with it as long as I don't push it and I keep my heart rate at reasonable rate....I don't run at a fast pace. I don't have an ICD, but take 100 mg of toprol XL daily. I did pass out while running two years ago, but haven't had any problems since then.

Pattie,

I think it's great that you're doing what you love!

Was your HCM specialist able to figure out what caused you to 'pass out' during your previous run? I only ask this because passing out is a pretty big red flag for those of us with HCM, and if he says he's 'okay' with you running he must have pretty good reasons for allowing you to continue, especially without the benefit of an ICD.

On a personal note: I don't particularly like the term 'mild HCM'. To be honest I don't think there is such a thing. You either have it or you don't. You may be asymptomatic, but I don't believe symptoms alone dictate the course of the disease or risk of sudden death. Many folks have died while asymptomatic.

Please take care,

Jim

[Pattie]

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

Hi Jim,
My doctor sent me to Cleveland Clinic after I passed out and they said it was because of paillary muscle. When I went back to my local doctor he said since I haven't passed out and I haven't had any dizzy spells I could start running again. I realize I'm taking a chance, but I will always do what my doctors say. My brother also has HCM. He has an ICD and just started to mild exercise (he was diagnosed 14 years ago). I'm not promoting people with HCM to run, I just think if you have always been a runner, maybe you can continue at a slower pace.

I also agree about the term "mild form of HCM", but I consider my HCM mild because my septum has been measured from: 13-16 mm and I've done well on my stress test and my halter monitors.

[nzelich]

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

This is my first time visiting this site in a long time. I think it’s great that this thread still gets (pardon the pun but…) RUN! It’s the one that made me join, and also the one that made me quit visiting regularly. I bike, play basketball, play tennis, or run almost everyday. My doctors are okay with it, but better yet, it keeps me sane and fit. I quit visiting because I don’t need people calling me reckless for doing what keeps me healthy mentally and physically… My two cents…

Nick

[armstrong]

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

I quit visiting because I don’t need people calling me reckless for doing what keeps me healthy mentally and physically…

Hey, welcome back. I agree that some postings tend to disregard the variability of the disease. Some HCMers have few symptoms, others severely debilitated; some are at low risk for dangerous arrhythmias, others high; etc. I exercise hard and often, so I'm in your camp. I've heard attitudes on this site that sound completely defeatist and unhealthy to me. Vive la différence. Too much useful info here to not keep coming back though.

[JohnP]

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

I agree its very hard to hang up the running shoes and take up chess. I don't think we've scraped the surface on the psychology of it all. If you've been in some type of training, in some cases for years, and you still feel fine physically, there's no on/off switch where you can just stop.

...I thought running with HCM was out there...

http://hearttransplantironman.blogspot.com/

[CBK75]

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

RUN! LIVE! It's good for the body and mind, but always listen to your doctors!!!

Although I am waiting for a transplant, just a couple of years ago I ran a half marathon and always have gone to the gym 4 days a week, yoga, ski....you name it.
Was it going to happen if I didn't exercise, this thread has many opinions.
My doctors have told me that if it wasn't for my exercise and fitness that I would not be here today, and with an 18% functioning heart I am still getting to the gym....better fit than fat. It comes with a whole other set of problems.

TALK WITH YOUR DOCTOR find what they think is best for you.

Chris