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

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@randimarie

Hello. I'm Randi, and just diagnosed with HCM yesterday, June 28th. I'm nervous and frankly, scared. Trying to learn all i can to better myself. I'm trying to change my diet and start walking. I'm going to really miss coffee! Anyways, any and all help, tips are appreciated! I look forward to getting to know you all, we are in this together!

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Replies to "Hello. I'm Randi, and just diagnosed with HCM yesterday, June 28th. I'm nervous and frankly, scared...."

Welcome to Mayo Connect @randimarie! I am so glad you found this site, and you will be too because there is so much information you can learn about HCM and HOCM here on Connect.
I applaud you for trying to learn as much as you can about HCM. I always think it is best to know what you have and start learning as much as you can.
Have you read this:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
This is from the Mayo Clinic and features Dr Ommen, who is the top doctor in the world on all things HCM.
I was diagnosed with several different heart diseases before I was finally diagnosed with HCM. I read as much as I could and found comfort after signing up for Mayo Connect because I was not alone.
I had just been diagnosed and found out that same day I needed to have open heart surgery. I was so not prepared for that information! Camzyos was not an option for me as they were in clinical trials, but I feel like having the septal myectomy, no matter how scary it sounds, was the best thing for me. I do not like medications and taking them for life did not sound appealing to me.
We are all different and what works for some may not work for others.
Tell me a little about you...you mention trying to change your diet and start walking. Are you healthy other than the HCM?
Before I knew what I had, my feet would swell like I had heart failure, so I cut out as much salt as possible. I did not give up my one cup of coffee per day. That was not an option! The coffee didn't affect me negatively. I learned by trial and error that with HOCM you can have good days and bad days. Eating large meals had a terrible affect on my heart. Some days I could walk six miles and only have to stop four or five times. Other days I had to stop a dozen times before I did one mile. It didn't make sense.
Is your cardiologist familiar with HCM and treatment options? Are you close to a COE (Center of Excellence)? Has anyone else in your family been diagnosed with HCM?