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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 7 hours ago | Replies (878)Comment receiving replies
@jess51
Hi Jess, I am a 69 year old, female. This is not genetic. I am on my second month of Camzyos and I feel much better. A few weeks ago I took my Covid and flu Vaccine at the same time and the next day I was in the emergency room for arrhythmia. I do not know if was the shots were too strong or this is from obstructed HCM. My doctor in Memphis did not say. I do go to exercise 3 times a week. I take Amiodarone twice a day. I am feeling tired. I go back to him next week. Since they do not treat HCM in Memphis I drive to St. Louis for my echo’s . I would like to have a buddy to go through this with me. I found out I had HCM 7 months ago. I went to get a cataract done ( it was fine) but ended up in the hospital that night for fluid in my lungs. This is my journey so far.
Replies to "@jess51 Hi Jess, I am a 69 year old, female. This is not genetic. I am..."
@memphis901
Hi, I am a 75 year old female who lives in Mississippi, not too far from Memphis. Why do you say that HCM is not genetic when every source I can find says that it is. I am zeroing in on my mother's maternal grandparents as being the side of my family that passed the gene on. They both died fairly young in age. One of their sons had 3 sons who each died at a relatively young age of some kind of heart problem, and their father had heart issues, as well. Most of my other ancestors all lived very long and productive lives. I am also curious as to why you think HCM is not treated in Memphis? My own cardiologist is with the Stern Clinic in Oxford, and they are working to get me approved for Camzyos.
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@memphis901
I am in Memphis and have been on camzyos for 3 years with great results. You can follow my posts on this forum.
Get a referral to Sutherland Cardiology Group Memphis, Heart Failure Clinic, Dr. Anderson. Part of the Methodist/ LeBonneur Health System.
No need for you to travel to St. Louis for all of your camzyos after care and monitoring. They also have excellent and experienced Echo Cardiogram Sonographers which is very important.
I have no experience to share if you require surgery, thankfully.
God Bless!