← Return to HCM-ers: Introduce yourself or just say hi

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@karukgirl

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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Replies to "Hello @johnlich, and welcome to Mayo Clinic Connect. I am glad you are here and shared..."

Hi to all, I have learned more on this site then from my Cardiologist a big thank you to all on using this site