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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 6 days ago | Replies (1230)Comment receiving replies
Hello. Danny here, 65 year old man with oHCM. Was diagnosed in late December after 7 months of pain last year. Have tried 2 different metoprolol medications after no help. Started on 5 mg of Camzyos yesterday after making 2 trips of over 4 hours round trip to my cardiologist in Atlanta. Not looking forward to the monthly trips for the echos unless the medication works. A little overwhelmed by the fatigue I have before I even start on Camzyos. Looking forward to any help I might get here.
Replies to "Hello. Danny here, 65 year old man with oHCM. Was diagnosed in late December after 7..."
@dconner Danny, I join Debra @karukgirl in welcoming you to Connect! We are all so different in how HCM can affect us and the specific treatments that help us lead our best lives. I am glad to read that you are trying Camzyos, it was still in test stages when my HCM needed mote intervention, I am also glad Debra suggested that you look at https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/. It's worth the travel to receive the best care. Have others in your family been diagnosed or have past generations exhibited heart issues? This is an inherited disease, please be sure that your blood relatives are screened. My HCM journey started with a heart murmur in my mid-late 50's, have you had other symptoms before you experienced months of pain? We love to encourage others and share our experiences, but please do be aware that we do not give medical advice. Do keep us posted!
Connect
Hello Danny, @dconner, and welcome to Mayo Clinic Connect.
This is a great place to come to both share your story and learn from others going through the HCM journey.
HOCM certainly does cause fatigue. It can be debilitating for some. Have you had a chance to check out the Camzyos Group? They are the best group for sharing how Camzyos has or has not helped them and all the symptoms along the way.
Here's a handy link to those posts:
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
I know is may be inconvenient to travel, especially with the price of gas these days (ouch!) but this is your health and your life, so though it may be annoying, you are worth it!
You started just a day ago, and things may change rapidly. Some people report near miracles in their symptoms going away, and others take longer. Some just can't handle the drug.
You know you better than anyone else, so you will know if the Camzyos is helping or not.
Check out that Camzyos link and read what so many others have shared.
Connect does just what it says...Connects people with similar conditions, which is wonderful because you are not alone.
When is your next echo?