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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 1 day ago | Replies (968)Comment receiving replies
Hello @deedee1958, and welcome to our little group here on Mayo Clinic Connect!
You ask a great question, and I am not an expert by any stretch, but I would say that most people with HOCM have these same symptoms.
And the weird thing is that there are good days when you forget you have this condition and days you think you could sleep all day and get short of breath just tying your shoes!
So in my opinion I think what you describe goes along perfectly with HOCM.
Have you had a chance to read some of the posts here on Connect?
Have you read this from the Mayo Clinic?
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Or this from HCM.org?
https://www.4hcm.org/
I have another question for you!
Is your cardiologist up-to-speed on treatment of HCOM?
That is super important for you going forward.
HOCM can progress like any disease, and it's up to you to be your own best advocate and educate yourself on all you can about what you were recently diagnosed with.
In my case I was misdiagnosed for several years and by the time I was correctly diagnosed at the Mayo Clinic in Rochester (which is the leading Center of Excellence for treatment of HCM and HOCM) my heart was enlarged and failing and I needed open heart surgery.
Not to scare you! But it felt like it progressed from random days of good and bad to really bad in a short time period.
I'm so glad you are here and encourage you to get familiar with your HOCM...
When is your next echo?
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Thank you very much for your reply I appreciated reading the link you added -- im not real sure how much my cardiologist knows about hcm -- he stressed how minor mine is which im thankful for -- when I saw the nurse practitioner she did say they were going to do frequent echoes to keep an eye on it im not sure if she said just how often I think maybe every 6 months. I think I was the one that first said the words HCM -- they had just described a thickened bottom of my heart and I looked it up and asked " is my diagnosis hcm???yes but minor. Is there a way to know if cardiologist is well versed in hcm? This cardiologist put me on verapamil and I don't have the chest pains at all now -- just the strange tiredness and the shortness of breath like you mentioned maybe from just tying my shoes. When it grips me it may be for a few hours or a day or 2 then when it disappears I can go about normal business and never even think about the all consuming " what in the world is wrong with me I can't even do this simple thing without resting and getting my breath!! Hey --- do you have a terrible cough with yours? I just wondered if my cough is related -- it's non productive -- and very intense !! I feel like I coukd black out -- i never have but feel I've come close a time or 2