Frustrated: Acing the treadmill test but chest tightness while walking

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?

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!

Well you are in a great place here on Connect. It's a supportive community and you will find you are not alone, which is a comfort when you are in shock!
I am glad to hear you have a great care team going forward. John Hopkins is well known and certainly up on HOCM.
I was also told to be careful before I had surgery. SCD, sudden cardiac death was what I was told could happen. Imagine hearing that! Oh my gosh...and all this time I didn't know? I was told no yoga, no weight lifting, no motorcycles and no strenuous hiking. Dang! All the things I loved.
It weighed heavy on my mind and I was in shock too. I was not looking forward to having open heart surgery, but I was willing to risk that versus not having a life anymore. I am so grateful I had surgery and the best care in the world at Mayo Clinic. It's been four years now, and I do still have symptoms, but nothing like before.
I hope you come back and let us know how your appointment goes next week. Is it far from where you live?

Thank you so much - this is so helpful. So far my local cardiologist said Camzyos would be right for me - more to come from Hopkins but I don't think that I will need surgery. I live on the east coast in Delaware. Hopkins is near Baltimore - about 2 1/2 hours from here - which could be challenging with the follow-up protocols but "oh well." I am so glad to have found this group!

That's not a bad distance at all! Wonderful to be close to a top COE (Center of Excellence)
I have to fly across the country to get to Mayo Clinic, but it's worth it when you know you have top people working with you.
I'm glad you found this group too. It's a blessing for so many folks. And you don't need to be a Mayo patient. It's for everyone. May I ask...how did you find Mayo Connect?

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?

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.

Thank you so much - this is so helpful. So far my local cardiologist said Camzyos would be right for me - more to come from Hopkins but I don't think that I will need surgery. I live on the east coast in Delaware. Hopkins is near Baltimore - about 2 1/2 hours from here - which could be challenging with the follow-up protocols but "oh well." I am so glad to have found this group!

Hi joycehocm, I also live in Delaware (New Castle County) and am being treated at the University of Pennsylvania Perelman School of Medicine which is about an hour to hour and half drive. Best of luck to wherever you seek help!