Fitness Programs with HCM

Posted by eritaykel @eritaykel, Sep 22, 2023

Is there anyone out there who considers themself a fitness enthusiast and who has adapted their workout style for HCM with success? Would love to hear any programs or regimens people are following that allow them to still feel fit and active.

I’m 42 yrs old . Last month I fainted unexplainably and have really noticed HCM symptoms since then.

Up until now I was an avid runner (slow pace) and gym goer. There has to be a way to still make fitness a big part of my life - isn’t there?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Hello @eritaykel, and WELCOME! to Mayo connect. I found this post you may find interesting.
https://connect.mayoclinic.org/discussion/weight-lifting/
I am older than you, but in my 50's I was in the best shape of my life. I also ran, though I describe it more as "scooting" and walked 6 miles a day. I hiked every week with a girlfriend, and did ballroom/swing dance lessons for ten years. Then things started to change and nothing was easy anymore. I almost hit the pavement on one of my walks and knew something was terribly wrong. It took 5 more years to be diagnosed correctly and afterwards I ended up at the Mayo in Rochester for open heart surgery. Dr. Evans, from the Mayo, told me not to lift weights or do yoga, or do anything super stressful before I had my surgery. That was his advice for me, and your cardiologist may say something entirely different. How long have you known you have HCM? Do you know if it obstructed (HOCM)? Do you take medication for your HCM? Do you find you have good days, where you feel normal and then bad days where you can barely tie your shoes?

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@karukgirl

Hello @eritaykel, and WELCOME! to Mayo connect. I found this post you may find interesting.
https://connect.mayoclinic.org/discussion/weight-lifting/
I am older than you, but in my 50's I was in the best shape of my life. I also ran, though I describe it more as "scooting" and walked 6 miles a day. I hiked every week with a girlfriend, and did ballroom/swing dance lessons for ten years. Then things started to change and nothing was easy anymore. I almost hit the pavement on one of my walks and knew something was terribly wrong. It took 5 more years to be diagnosed correctly and afterwards I ended up at the Mayo in Rochester for open heart surgery. Dr. Evans, from the Mayo, told me not to lift weights or do yoga, or do anything super stressful before I had my surgery. That was his advice for me, and your cardiologist may say something entirely different. How long have you known you have HCM? Do you know if it obstructed (HOCM)? Do you take medication for your HCM? Do you find you have good days, where you feel normal and then bad days where you can barely tie your shoes?

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Thank for such a helpful reply! The discussion you linked had great input.

I’ve known for 2.5 yrs, but haven’t had symptoms until recently. No obstruction and no meds, but yes I have good and bad days.

I’m really interested in understanding if there’s a safe max heart rate to serve as some sort to guide so will keep looking into that. My cardiologist is one of those who says “go live life” but I have a young daughter and when I think of her, that advice is way to vague!

Thanks again for the info 🙂

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@eritaykel

Thank for such a helpful reply! The discussion you linked had great input.

I’ve known for 2.5 yrs, but haven’t had symptoms until recently. No obstruction and no meds, but yes I have good and bad days.

I’m really interested in understanding if there’s a safe max heart rate to serve as some sort to guide so will keep looking into that. My cardiologist is one of those who says “go live life” but I have a young daughter and when I think of her, that advice is way to vague!

Thanks again for the info 🙂

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Hi. I tried posting a link last night but as a new member it won't let me post URLs. Do a Google search for "Heart Health By Design" and you should find the Peter Munk Cardiac Centre's site. Hope it helps you.

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@boatsforlife

Hi. I tried posting a link last night but as a new member it won't let me post URLs. Do a Google search for "Heart Health By Design" and you should find the Peter Munk Cardiac Centre's site. Hope it helps you.

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https://connect.mayoclinic.org/comment/681070/
Hello @boatsforlife, I found this from Colleen Young, Mayo Clinic Director/Moderator, @colleenyoung that explains the inability to post URLs as a new member. Hope that helps! In the meantime, I responded to your post on Camzyos, and welcome you again! Colleen is from Canada just like you. I hope you are able to find your way around Connect. The Hypertrophic Cardiomyopathy group grows bigger each day as more people find Mayo Connect. There is something so special about Mayo Connect, in that we can share our stories and help each other navigate our conditions and feel a sense of community. It is comforting having others who share our diagnosis and to be able to bounce thoughts off each other. Have you had a chance to look at other posts under the Hypertrophic Cardiomyopathy heading?

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@boatsforlife

Hi. I tried posting a link last night but as a new member it won't let me post URLs. Do a Google search for "Heart Health By Design" and you should find the Peter Munk Cardiac Centre's site. Hope it helps you.

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Thank you! I’m actually in Toronto and a patient of the Peter Munk clinic 🙂

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@boatsforlife

Hi. I tried posting a link last night but as a new member it won't let me post URLs. Do a Google search for "Heart Health By Design" and you should find the Peter Munk Cardiac Centre's site. Hope it helps you.

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@boatsforlife, You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Allow me to post the link for you (it's clearly not spam :-)). The Peter Munk Cardiac Center is an excellent center.

- Heart Health by Design https://hearthealthbydesign.com/ or http://hcmfitness.ca/

It's a bit silly that they have 2 urls that lead to the same website though. 🙂

Boatsforlife, are you following one of the fitness programs in Heart Health by Design? What helps you stay motivated and dedicated to it?

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@colleenyoung

@boatsforlife, You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Allow me to post the link for you (it's clearly not spam :-)). The Peter Munk Cardiac Center is an excellent center.

- Heart Health by Design https://hearthealthbydesign.com/ or http://hcmfitness.ca/

It's a bit silly that they have 2 urls that lead to the same website though. 🙂

Boatsforlife, are you following one of the fitness programs in Heart Health by Design? What helps you stay motivated and dedicated to it?

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Thanks for this @colleenyoung. I completely agree with restricting newbies' ability to post URLs until they are proven, or at least suspected to be, real.

@karukgirl , I'm slowly picking my way through some of the other HCM subheadings (hence my presence here). The one that floored me was the question about out people with HCM having trouble eating - I've lost 30 pounds in the last 18 months because I feel so much better... well, so much less crappy... when I DON'T eat. To see my exact symptoms being described by several other people was really validating!

And @eritaykel , lucky you to be at the Munk Centre. I guess I probably didn't need to find that link for you after all! Unlike you, I'm not a fitness enthusiast. Much more like the poster child for lazy. But hopefully when I start Camzyos this week things will turn around and I will actually be able to start doing more than walking to and from the car without awakening the demon within.

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@eritaykel

Thank you! I’m actually in Toronto and a patient of the Peter Munk clinic 🙂

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Hi. I’m also at Peter Munk Centre. May I ask who your doctor is? I thought I was the only Camzyos patient there as I had to ask for this medication.

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I’m not on Camzyos so unfortunately I won’t be too helpful! I’m surprised it’s not being offered more at the clinic since it seems to really be helping a lot of folks

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My cardiologist gave me a soft heart rate target of 120 to try to keep under when I am active. He told me this when he gave me the results of my stress test/echo. It’s ok if I accidentally go over 120 on occasion which I sometimes do on a hot day walking up a steeper hill. My hocm is not too bad and I take 125 of metoprolol and 500 of disopyramide (rythmodan) everyday. I am not a candidate for Camzyos at present and it does not appear to have much promise for my type of cardiomyopathy. I am an active person but not sporty. I try to do the Munk HCM exercises 5 times a week along with limited yoga and an exercise bike. They make me feel great but if I overdo it or the day is too hot I will have extreme fatigue for a day or two before I feel better. I take a rest on those days. Mostly when I exercise my heart rate stays between 95-110 though.

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