HCM-ers: Introduce yourself or just say hi

Hi I was recently diagnosed with ohcm , tho they say it's very minor at this time. My question tho is even if mine is minor coukd it be the reason there are times im so short of breath I can't do any work? I thought im getting terribly lazy ! Then the shortness of breath let up and the days afterward I coukd work like I always did. The bad days I walk around in the house and im so wore out I can't get the job done I went to do. Could this be the hcm?

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?

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

@deedee1958, a cough like that does not sound like HOCM, I would pursue further why you have such a terrible cough. I found this online...it's long, but at the end under side effects it does list coughing bad enough to cause pink sputum. That's a bad cough!
https://www.mayoclinic.org/drugs-supplements/verapamil-oral-route/description/drg-20071728
I also found this online from AI:
"Yes, verapamil can cause coughing as a side effect, although it is not very common. If you experience persistent coughing while taking this medication, it's important to consult your healthcare provider."

It sounds like your cardiologist may not be totally up to speed on this condition.
On the 4hcm.org site they list COEs (Center of Excellence) in your state and you can look and see if you are near one.
I had COEs closer to me in California, but after doing my research I chose the Mayo Clinic in Rochester, even though it meant I had to fly across the country to be seen. But I was seen by the top people in the world for this condition.
I never regretted this decision.
My advice remains the same...learn as much as you possibly can about what you have living inside your chest and seek out the best care possible.
Don't settle.
This is your life.
HOCM can be mild and then what seems like all of a sudden you need open heart surgery or Camzyos. So stay on top of this.
All the beta blockers and calcium channel blockers do is lessen (to some degree) the symptoms. But they do not treat the cause. I had intolerance to every single one they put me on and it was so frustrating. Now after my septal myectomy I am free of every med except I take baby aspirin every day. It's is such a great feeling because I remember so well on some days I thought I may die. Like really. Just die from whatever was going on. It was scary to live like that!
When do you see your doctor again? You need to mention that cough!

@karukgirl Debra gave good information here, as always. I've concluded that cardiologists have their special areas. It would in your best interest to ASK/research yours about HCM. I was fortunate to "be assigned" to a cardiologist with interest and experience with HCM when I was first referred with a murmur. On the website of the hospital system here (Albany Med), staff is listed by specialty with their areas of expertise and interest. I was taking verapamil before surgery. No symptoms for years, then suddenly I did with shortness of breath as the main complaint. At that time the verapamil was increased and taken till a few days before surgery. That resulted in a problem not even Metamucil or eating unsalted nuts could solve! I do remember soft coughing and was told it was a sign that my lungs were having difficulty functioning properly. I suggest getting the cough checked out and keep in mind that the effects of HCM vary from person to person.

I sure appreciate your comments -- I see the Doc again in sept and I will ask about this cough - cause it's bad lol and I will keep researching and learning all i can and reading from this site daily

Do you take Lisinopril?