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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 4 days ago | Replies (989)Comment receiving replies
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
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@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.
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@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!