Frustrated: Acing the treadmill test but chest tightness while walking

Posted by hopenr @hopenr, Oct 31 8:17pm

I cannot get Camzyos cause I ace the tread mill. Can run fast and uphill with no problems. But every single day walking my dog or going to the mail- I have chest tightness and pain. I do not understand and I am sad and frustrated. My doc is a COE.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Look for a second opinion with another Cardiologist that treats HCOM (obstructive hypertrophic cardiomiopathy) and is "Camzyos certified". I reduced my chest pain after I lost 20 pounds in only 8 weeks by eating half of what my healthy diet is and adding a set of multi-vitamins for 65+ age since that is my age range. If you call the Camzyos line ( 1-833-628-7367). they can give you a list of certified Cardiologists in your area. I wish you can find a solution for this.

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I never had chest tightness and pain in my chest with HCM. Have you discussed your symptoms with your cardiologist? I don't know anyone who can "ace" the treadmill test with HCM.

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I know. This is the second time this happened. The first was a VO2 Max test and this time an echo stress test. the timer goes off or my heart beat gets to a certain level and I have no symptoms. But then on ordinary tasks, I have symptoms. My doctor is a cardiologist at a COE. I am waiting for some genetic testing results and then will press for more guidance.

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@whidbey

I never had chest tightness and pain in my chest with HCM. Have you discussed your symptoms with your cardiologist? I don't know anyone who can "ace" the treadmill test with HCM.

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I, too "aced" the treadmill test with HCM for many years. Never had another one after a different complication of HCM took place - syncope. Just from reading the comments, I learned that each of us can exhibit a different set of HCM symptoms. My cardiologist remarked that I had an unusual presentation of HCM, never had chest tightness or pain or breathing issues when exercising till after that syncope.

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@hopenr

I know. This is the second time this happened. The first was a VO2 Max test and this time an echo stress test. the timer goes off or my heart beat gets to a certain level and I have no symptoms. But then on ordinary tasks, I have symptoms. My doctor is a cardiologist at a COE. I am waiting for some genetic testing results and then will press for more guidance.

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When you receive your genetic testing results, please share whether your mutated gene is found. The 123 genes tested on my DNA were all normal. It is believed that my mutation has just not been discovered thus far.

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@walkinggirl

When you receive your genetic testing results, please share whether your mutated gene is found. The 123 genes tested on my DNA were all normal. It is believed that my mutation has just not been discovered thus far.

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All of my genetic testing results were normal also.

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@hopenr

I know. This is the second time this happened. The first was a VO2 Max test and this time an echo stress test. the timer goes off or my heart beat gets to a certain level and I have no symptoms. But then on ordinary tasks, I have symptoms. My doctor is a cardiologist at a COE. I am waiting for some genetic testing results and then will press for more guidance.

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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.

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@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.

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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?

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@karukgirl

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?

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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!

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