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HCM-ers: Introduce yourself or just say hi

Hypertrophic Cardiomyopathy (HCM) | Last Active: 5 days ago | Replies (930)
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@johnlich

Hi Colleen,
I have been living with HCM for several years now and really noticed a decrease in my energy and ability to breath especially when walking up hill. I play hockey regularly and the last year or two I have shortened my shifts because of lack of breath.

I am a woodworker and photographer and find now wearing a mask doing woodwork is exhausting after a few hours as the mask restricts the air I am getting into my lungs.

I am planning on doing less live edge woodwork (which I Love doing) and doing more photography where your outdoors with wildlife which is also very exciting.

I was writing to you today to see if there are any cures or operations that I can get so my breathing gets back to normal so i can continue to do the physical activities I enjoy?

John

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Replies to "Hi Colleen, I have been living with HCM for several years now and really noticed a..."
Debra, Volunteer Mentor | @karukgirl | Jan 11 10:48am

Hello @johnlich, and welcome to Mayo Clinic Connect.
I am glad you are here and shared your story.
Have you taken a cruise around Connect and read up on HCM? Here is a link from the Mayo Clinic that has some good information about HCM both diagnosis and treatments:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/diagnosis-treatment/drc-20350204
And here is a link to the Hypertrophic Cardiomyopathy Association:
https://www.4hcm.org
HCM can lead to HOCM, or obstructed hypertrophic cardiomyopathy. Only your cardiologist or HCM specialist and you can decide what the best course of treatment is for you. For some Camzyos is a place to start. For other beta or calcium channel blockers help with symptoms, and for some, like myself, open heart surgery to remove the blockage is the treatment.
It seems, based on my experience and opinion, that many people with HCM progress to HOCM and that is when your quality of life goes south. Once you are no longer able to do what you used to with ease and find the most routine and mundane activities cause you to gasp for air and your heart races and you have chest pain...that is usually when we seek treatment, because...well...because we can't do things we love any longer.
When do you plan to see your cardiologist? Are they up to speed with Hypertrophic Cardiomyopathy? That is super important. And you need to also become as educated on your condition as possible so you can be your own best advocate. Sometimes it takes a second opinion or even a third opinion to reach the right place for treatment. It took me three opinions, and the last one with at the Mayo Clinic in Rochester. They truly are the best in the world for all things HCM.
You sound like a super healthy person, so no wonder it is so frustrating to lose the ability to do the things you love, and to enjoy doing them!
Do you have plans to see your doctor soon?

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