Anyone have input on living with symptoms from cardiomyopathy?

@bevjune, there are so many acronyms out there in the world, it's no wonder we all get mixed up! I'm glad you found the Hypertrophic Cardiomyopathy group. You mentioned you were recently diagnosed and then not given any more information. That would be frustrating indeed! HCM is not something that many cardiologists are familiar with. The symptoms seem to fit a lot of different heart issues...and lots of people, myself included, go misdiagnosed or undiagnosed for a long time. In this day and age, it certainly isn't easy to change doctors, but to find a cardiologist who specializes in HCM is really difficult. It is really important to learn as much as you can about your condition and to educate yourself about treatment options, medications, exercise and other life activities. If your doctor is not familiar with HCM, you have to be your own advocate. You will find a lot of information on this site. Take a poke around and read up on others with this same condition. What test or study did you have that your doctor finally decided you had HCM? Do you live near a Center of Excellence (COE)?

@bevjune, there are so many acronyms out there in the world, it's no wonder we all get mixed up! I'm glad you found the Hypertrophic Cardiomyopathy group. You mentioned you were recently diagnosed and then not given any more information. That would be frustrating indeed! HCM is not something that many cardiologists are familiar with. The symptoms seem to fit a lot of different heart issues...and lots of people, myself included, go misdiagnosed or undiagnosed for a long time. In this day and age, it certainly isn't easy to change doctors, but to find a cardiologist who specializes in HCM is really difficult. It is really important to learn as much as you can about your condition and to educate yourself about treatment options, medications, exercise and other life activities. If your doctor is not familiar with HCM, you have to be your own advocate. You will find a lot of information on this site. Take a poke around and read up on others with this same condition. What test or study did you have that your doctor finally decided you had HCM? Do you live near a Center of Excellence (COE)?

My mistake. I thought I had seen that abbreviation. I will use HCM which makes more sense.
Thank you for the info.
I take my blood pressure at least 2 times a day. Not happy with it but Heart Doctor says it's ok.
I may change doctors but That is not easy.

Hello @bevjune, and welcome to Mayo Clinic Connect. I noticed that you are posting on the Hypertrophic Cardiomyopathy Group, or HCM. You said you were recently diagnosed with "HTM". I am not familiar with that acronym, can you enlighten me on HTM? You mention also you are taking meds prescribed by a heart doctor, but you were given no further information regarding what else you should be doing for your newly diagnosed condition. That would be very stressful, no wonder you are concerned. Can you explain what HTM is?

O2 (Oxygen Percent) should be 98% or better. Mine goes up and down, from 50 to 100%. Rather frightening, I believe. oldkarl

I have also recently been diagnosed with HTM. Other than meds, heart doctor has no further info on what I should be doing. Very stressful.

I have also recently been diagnosed with HTM. Other than meds, heart doctor has no further info on what I should be doing. Very stressful.

I had two last year stress test
I do talk to my doctor ,
She knows my concerns
I want to know everything
We on same page
Seems when I do cardio I feel
Not tired
Keep in touch
Enjoy the day

For many, fatigue is definitely a symptom of hypertrophic cardiomyopathy. But it is also present in many other situations as well. September is a long way off...do you have a list of symptoms and questions you are prepared to ask your doctor?