Anyone have input on living with symptoms from cardiomyopathy?

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

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?

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.

@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)?

Had various symptoms, even while on medication. I was diagnosed about 6 years ago. Have been hospitalised for arrythmia twice, had pneumonia plus tachycardia requiring cardio version once, had 3 angiograms so far. Very important to be calm. Think positive thoughts, take it one day at a time. Rest. Dont allow stress. Take your medication. Eat vegan if possible, keep cholesterol down. Move around as much as you are able. Watch heart rate, rather use weight training and resistance for mobility and muscle tone.

It is a real struggle. I just do what I can do. I decided to start walking everyday on an indoor track. Even if I can only walk for 10 min it’s better than nothing. I changed my diet, I found that greasy food made it worse. I try and reduce my stress. That’s a hard one but it does help. I am now on medication and honestly it has changed everything. I have now worked my way up to a 5km walk daily