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Frustrated: Acing the treadmill test but chest tightness while walking
Hypertrophic Cardiomyopathy (HCM) | Last Active: Nov 8 9:34am | Replies (19)Comment receiving replies
Hello and welcome to Mayo Connect @joycehocm. Have you had a chance to poke around here on Connect? I posted the link to the Camzyos support group below. They are a great source of information on many things Camzyos.
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
If you get a chance, check out posts from members like @jaymaysea and @kelliw and @boatsforlife and @walkinggirl . These seasoned Camzyos warriors have shared amazing information with the group and have a lot of knowledge regarding the program.
HOCM is so weird!
I think it is common for many of us to get short of breath doing mundane chores or simple tasks. I just got back from the Mayo Clinic a few weeks ago and aced the VOX stress test, and had only a few minor issues they plan to watch, but my main complaint was why can I walk up seriously steep hills and be okay, and changing sheets or vacuuming makes me short of breath and light headed. I didn't get a good explanation, but I do plan to follow up on the patient portal with an update. I had a septal/papillary myectomy, and still have HCM symptoms. We are all different, but do seem to share many symptoms in common.
Are you an active person physically? Is your cardiologist up-to-date on HOCM?
Replies to "Hello and welcome to Mayo Connect @joycehocm. Have you had a chance to poke around here..."
Great info here. My cardio is very up to date and the doctor he consults with is one of the doctors that "founded" Camzyos. I am waiting for a genetic heart test results and then will push for further care and intervention although the side effects of Camzyos are very concerning to me.
Debra, I have never been prescribed Camzyos, my gradient was too high according to the guidelines. My sweetheart daughter-in-law had researched it when my HOCM suddenly became a quality of life issue in February, 2022. My cardiologist said he read that patients prescribed that drug often eventually needed a septal myectomy. I had a septal myectomy at Mayo 7/21/2022.
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Thank you so much for this reply and your welcome. I am moderately active but since the diagnosis in October, my cardiologist and primary have both said to take it easy until I see the REMS team - sometimes hard to know what "take it easy" means. I am headed for the cardiac REMS team at Johns Hopkins next week for the first time - they are certified and I believe are very up-to-date. It is helpful to know that everyone's symptoms are different as well. This has all been a bit of a shock!