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Reaching out pretty over whelmed, options on care,

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Replies to "Reaching out pretty over whelmed, options on care,"

Greetings @janetsuewright, and welcome to Mayo Clinic Connect. I see you have found the HCM group, which will be of great comfort to you. You will find here other people, just like you, who share this condition. Many, dare I say most of us, were overwhelmed when first learning of this diagnosis.
I can share that for me, I was both relieved (at last I finally knew what I had!) and terrified (am I going to die?), so I totally understand feeling overwhelmed.
Have you had a chance to read the numerous posts here on Connect?
There are many.
Have you had a chance to educate yourself on what is living inside your heart?
Here's a post from the Mayo Clinic regarding HCM:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
May I suggest that you learn as much as you possibly can about this condition. This will help you understand your symptoms, and you will also be better able to share in the decision process along with your cardiologist.
There are treatment options, as you mentioned, and you need to know what they are, and which ones would be best for you.
Right now you are overwhelmed and rightly so. The more you learn, the less you will fear.
When do you see your doctor next?

@janetsuewright Welcome to the HCM blog on Connect, I see that this is your first post, I am assuming you are newly diagnosed with HCM, we are glad you joined us, the big-hearted people crew. Overwhelmed is probably an understatement, you have come to the right place because we have all been in your shoes. It will take a while to organize your thoughts with everything that is overwhelming you at this point, so do be patient with yourself and you will get a handle on "options on care." The first and second things many of us suggest are to become associated with a COE (you will learn too many acronyms, this one is Center of Excellence), such as Mayo Clinic where people have been treated for HCM for decades. The other suggested step is to learn as much about HCM for your own knowledge and to formulate your questions to your doctor. May I suggest as a starting point https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198. Besides Connect, I belong to an organization Hypertrophic Cardiomyopathy Association (4HCM.org) which helps people with finding a COE, has Zoom discussion groups and many additional resources. Please do contact them for an intake interview. Together, in different ways, 4HCM and Connect give much information and support. How did you find out that you have HCM? Have other family members been diagnosed (HCM is inherited). How is HCM affecting you? Again, welcome and we look forward to hearing from you. (As soon as I posted this, I saw that my fellow mentor, Debra, responded to you, too! She writes such helpful posts.)

@janetsuewright
Can you tell us more about what you want options on, please?