Exercise and HCM

[Ineed2tri]

Hi,

I was recently diagnosed with having HCM and prior to the diagnosis have always been active. In the past 2 years, I have been competing in triathlons and I LOVE training and competing in them, so as you can imagine, being diagnosed with HCM has been quite a downer. Although I keep reading about how those with HCM should not compete in sports, I have yet to find out why. Can someone answer this ever present question in my mind as to why I should give up competing in triathlons, especially since I have no symptoms of HCM? And I mean other then the typical explanation of it reducing the risk of cardic arrest - my question is more, what about exercise increases this risk? Thanks!

K

[Cynaburst]

Re: Exercise and HCM

Strenuous exercise increases the stress on the heart which is already stressed by the physiology of HCM. It puts you at risk of sudden death and you also risk doing further harm to your heart by pushing it harder.

You should call the office and get them to explain it to you in better detail, and if you join the HCMA you will get the book written by Lisa and Dr. Maron which explains these things better so you will understand why you need to make adjustments to your lifestyle.

Moderate exercise is good. Strenous exercise where you push your limits is bad.

[mantrashak]

Re: Exercise and HCM

It was once explained to me along the following lines:

The HCM heart does not function efficiently. There's more muscle which means there's less cavity available to be filled by blood, the extra muscle makes the walls of the heart less flexible, and vessels in and out of the heart may be restricted.

When you exercise, your body needs more oxygen, so the heart has to beat faster. When you are involved in competetive sports, you don't stop to give your body the break it needs - you continue pushing yourself. The danger with an HCM heart is that it will start beating so fast that it's no longer acting as a pump at all. It essentially goes into tachycardia and when this happens, apart from failing to act as a pump, the heart itself requires more oxygen and nutrients as it overworks. And if the heart is unable to recover (which it often can't without the aid of an electric shock, hence the recommendation of ICDs in many cases), the result is sudden death.

[mtlieb]

Re: Exercise and HCM

Ineed2tri,

To clear one issue up first, exercise in general is NOT considered bad for those with HCM. In fact it is encouraged to maintain good health. It is the 'competitive' sports and similar activities that are discouraged because of the risk of sudden death.

The specific mechanism for this, as explained to me, is that sudden burst-type activities release a rush of adrenaline into the system that can potentially cause lethal arrhythmia and sudden death for us. Competitive sports most certainly fall into this category, as well as other burst-type activities like heavy weight-lifting. Add to this the fact that with competitive sports, especially a triathlon, you will tend to push yourself well beyond the capacity of your HCM heart and ignore certain red flags in favor of winning the race. It only needs to happen once.

It should also be noted that the vast majority of those who succumb to sudden cardiac death had few or no symptoms prior to the episode which claimed their life. Whether or not you are experiencing symptoms should not be considered an effective gauge for sudden death. Just ask Sharon Bates.

I do admire your level of physical activity, and encourage everyone to exercise to the fullest extent possible. I just don't see a triathlon as being a viable activity for those with HCM. It is your personal choice however, and we all must respect that.

Jim

[Seabee Vet]

Re: Exercise and HCM

I'm NOT real happy that I had this all typed in, pushed the wrong icon and now have to retype it from nothing. BUT...

I have been active all my life, playing sports, spending 15 months in Vietnam, a Military Training Instructor my last year of service, etc. I was unaware of any health problems and told at one time not to worry about my heart, it was very strong.

In 1991 I was diagonosed with a "heart murmur", I was 46 years old. My Dr. asked me if I've ever watched a football game where the guy runs across the field toward the goal line and suddenly dropped dead? Then, the good news..."THAT COULD HAPPEN TO YOU!!"

In 1994, at 49 I joined a health club and started lifting weights. I had lifted free weights for awhile in 1970 something. In 1999 I was rediagnosed with HCM after an Echo, at this point I had no symptoms and not aware of any problems. The Dr. started me on Atenolol and I began having shortness of breath, after 6 months I weaned myself off the Atenolol, after learning it would only cause my blood pressure to go up.

In 2003, after going to the local VA Hospital for treatment I was put on Verapamil, because I told the Doc about the Atenolol. It was determined I was "intolerent to beta blockers". The breathing restarted, but not a bad. In 2006 he started giving me Atenolol along with the Verapamil. This caused me to become lightheaded and pass out twice. The VA ER stopped the Atenolol, immediately and I again improved. I continued to work out all along, but was told not to use free weights, use the machines where the weight is automatically set. NO HEAVY EXERCIZING!! The shortness of breath finally got to me, I could only do 1 rep of 15, then had to rest 15 minutes, it was no longer worth going in.

In January 2007 I had a Myectomy. The Heart Surgeon said my strength made it possible, usually at 62 age is a major danger. I was given 2 Verapamil after the surgery and my heart stopped. I have not been getting Verapamil since. I now enjoy (?) Metoprolol Tartrate (100 mg) twice a day. That is all I take for my heart and after 6 months still have difficulty breathing, climbing stairs and walking long distances.

I'm NOT telling you it's OK to continue your exercise...I seem to be an unusal case (and much older). I will say try to continue and see how the medication does, don't push yourself and when you tire...STOP!!!

GOOD LUCK and GOOD RACE.

[mtlieb]

Re: Exercise and HCM

I'm NOT real happy that I had this all typed in, pushed the wrong icon and now have to retype it from nothing. BUT...

I feel your pain, Seabee Vet. I have now gotten into the habit of selecting my text, right-clicking, and hitting the 'copy' command before submitting long posts. That way if it gets lost, you can always re-paste it all into a new post or into a word-processing program. Just a suggestion.

[Seabee Vet]

Re: Exercise and HCM

I feel your pain, Seabee Vet. I have now gotten into the habit of selecting my text, right-clicking, and hitting the 'copy' command before submitting long posts. That way if it gets lost, you can always re-paste it all into a new post or into a word-processing program. Just a suggestion.

Thanks for the heads-up, I'll remember that.

[jorgusen]

Re: Exercise and HCM

I have been excercising all my life (56). Lifting and running 4-6 miles a day.
I knew something was wrong, but not through excercise ,it was the time I felt the best. Aafter 10 years of mis-diagnose I found a great cardiolpogist, a professor at OSU, that gave me an answer to my problems... I have no gradient at rest and provoked is 12,,,My only problem is he has been reassuring me the worst thing I could do is change my routine of excercise level , since my heart has become accustimed to a certain level.. I do lift weights ,,but not as heavy as before ,,did this on my own,,because of what I have read,, He has stated repeatedly to stay active.

I am going to a HCM speacialist at Stanford end of July ,,just to get another opinion,, though i do value him as a heart dr.
So,, I think it depends on the body
University of Wa. Women basketball coach (50 plus) has ben playing basketball and working out hard for many years,,yet she was in her car parked infront of the dr.'s office when she went in to cardic arrest and they shocked her back to life... She was there to discuss her treatment for HCM and irregular heart beat.,. They put a defib in and now pretty much back to her active life...
So I am really torn with what you read and hear..
PREPLEXED about levels of excercise too.
If you can do a trianthlon,,thats pretty impressive for anyone!!!

[Pattie]

Re: Exercise and HCM

I'm a 40 year old female diagnosed with HCM in Oct. 2006. Like many of you, I was an exercise enthusiast. In the last three years I have ran several mini marathons and complete a sprint triathlon. After I was diagnosed they put me on beta blockers and told me I could continue to run...but never alone. While running with a friend in April, I passed out and according to my friend had a seizure. I went to the Cleveland Clinic in June and was told that my septum is 1.6 (not too bad) and I have obstruction (the papillary muscle). My exercise is now restricted and they don't want me to get my heart rate over 120.
At this point I do everything but run. I swim, do the elliptical, spin class, weight training (10-15 lb free weights) and bike. I wear a heart rate monitor and if my heart rate creeps up past 120, I slow down. Everything is modified.

P.S. I really didn’t have any symptoms or problems with exercise until after I was diagnosed......I'm not sure if it's a mental thing or if the beta blockers are making things worse.

[sandylevitt]

Re: Exercise and HCM

Felix has finally started up exercising again. We joined this new gym. But he is wearing a heart rate monitor and is making sure that he doesnt go above 120. Also he is doing machines, not free weights. I know he has a call into the younger Maron to find our more about what he can and cannot do . Before he was diagnosed he at one point was a gym rat. He is happy to be back in the gym again, but frustrated that he has to limit himself. I am personally hoping that by exercising again he will lose those extra HCM lbs.

sandy

[jorgusen]

Re: Exercise and HCM

personally I feel much better when and after I excercise. I think it is important to do what you are comfortable. as far as heart rate it must be an indivual thing. My cardiologist has set no limits, but I am headed for that second opinion and a different set of tests.. I think most of this has to do with a gradient..Thoughts ...I take toprol xl 50 and it slows my heart rate down to where it makes me lathargic. Other htan that i dont think it does much.. I dont feel any difference if i am on it or not?

[EmilysMom]

Re: Exercise and HCM

We saw Dr. Maron (Martin) last week with our 14 yo daughter. He & Dr. Link agreed that she could continue to be active, and exercise, but not compete in sports, which seems to be the typical HCM recommendation. Their general rule of thumb is that you should not exercise at a rate at which you can not carry on a normal conversation. I think I could probably carry on a conversation at 140, but 120 would be well within the limits for most people. They seem to use that as a practical guide for those who are not monitoring their heart rate.

[Pattie]

Re: Exercise and HCM

Even with 75mg of toprol, by heart rate will get to 140-150 pretty quick.......but I slow down and bring it back down. At times I get frustrated, but it's better than not working out at all

[tyreke28]

Re: Exercise and HCM

Okay my 2 cents is usually worth about $.01...but I'll still give it. I have been told no major exercising but here is my problem. I am about 150 lbs overweight give or take depending on which of my doctors you ask. I have changed my diet and that has not been enough so I have began walking on a treadmill. Some day it's for 15 minutes and some days it's 75 minutes...that comes out to be .75 to 3.6 miles several days a week. I am hoping that this will get my weight down and also make my stress test on 08/03/07 not so stressing so that I can get my cardiologist to stop saying transplant. I have gotten better in the last 6 months or so, and I have lost 20 lbs in the last three months. Slow and steady is my plan and I know my limits. I also use a heart rate monitor that the sensor wraps around my chest and lays right where my heart is so it is more accurate that the pulse monitor on my treadmill. On hot days that I have to be out I wear it just because I have noticed that the heat stresses me.

What I am trying to say is know your limits, talk to your doctor, and if you think that you are overdoing it stop.

Okay that's my $.01.

[Ineed2tri]

Re: Exercise and HCM

Thank you all for your responses. It gives me hope that I won't have to end up giving up what I love most in life (of course besides my family and friends). I actually have an appointment tomorrow for a nuclear stress test to see if there is any obstruction (keep your fingers crossed that there isn't) and then my doc will tell me what I am phyisically capable of (which in my mind is a lot ).

I did notice that several of you mentioned that you try to keep your HR at around 120... what is that HR based on? Just what your doctors suggested?