← Return to Frustrated: Acing the treadmill test but chest tightness while walking

Discussion

Frustrated: Acing the treadmill test but chest tightness while walking

Hypertrophic Cardiomyopathy (HCM) | Last Active: Nov 8 9:34am | Replies (19)
Comment receiving replies
@joycehocm

I certainly can't ace a treadmill test but I am the same regarding ordinary tasks. I get breathlessness out of the blue - usually when NOT exerting but I usually don't get it when I climb stairs or play pickleball or bicycle. Just received HOCM diagnosis for the first time in my life (though I may have had it for a long time). I have no other symptoms (yet?). Have my first REMS team appointment next week - any suggestions on questions to ask are welcome. Also, I have tried to find out about paying for Camzyos (my local cardiologist said that I will need to go on it - and referred me to a REMS team). Am I correct that no medicare plan covers it? It is open season but my supplemental plan cannot even tell me which of their plans will or will not cover it because it will require pre-authorization as everyone has discussed here. So I cannot make an informed decision about which supplemental plan to select during open season. Has anyone had significantly good coverage with Blue Cross Blue Shield or Aetna or other? Thank you.

Jump to this post

Replies to "I certainly can't ace a treadmill test but I am the same regarding ordinary tasks. I..."
Debra, Volunteer Mentor | @karukgirl | Nov 7 12:15pm

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?

VIEW AND REPLY