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Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

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Hi everybody
I have been diagnosed with HCM for 23 years now...I have been put on an peacemaker...and everything went relatively smoothly...however, for some months now I have a lot of pvc
..that they have tired me ...and even though I am passing sotalol
..they have decreased a bit....I'm sad...
you had a problem with pvc....what did you do? when will they go away? or will I have gone by morning...to heaven? 🙂

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Profile picture for Debra, Volunteer Mentor @karukgirl

Don't hesitate to ask away! If even one little tiny tip I can share helps you, or anyone else who may be reading this...I am so happy to do so! I hope you keep me posted!

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Soooooo, is bad smelling urine a sign that this drug is wrecking my kidneys??
I will monitor this in case it was just something I ate or drank ( maybe the vitamin water I had ) ??

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Profile picture for tjunca @tjunca

That’s exactly the info I was looking for! Thank you for telling me that. I feel I can deal with things better when I have an idea of what to expect. Thanks again!

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Don't hesitate to ask away! If even one little tiny tip I can share helps you, or anyone else who may be reading this...I am so happy to do so! I hope you keep me posted!

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Profile picture for daral @daral

I know this is probably not serious but,
has anyone noticed bad smelling urine after taking these for the first three days?

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No, I didn’t notice any difference.

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Profile picture for nanakpm @nanakpm

Thank you for your quick reply. Much appreciated. Wishing you a good recovery!
I’m guessing Camzyos did not provide relief.

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It did provide much relief BUT the side effects of Camzyos (dizziness, head spinning, feeling sluggish) were the same symptoms I had before Camzyos. So a life of my heart being better but never getting to reap the benefits due to Camzyos side effects made me decide to just do the surgery.
That and the unknown long term effects of the Camzyos. Not knowing of it will later on give me liver or kidneys issues to deal with too

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Profile picture for Debra, Volunteer Mentor @karukgirl

Hi @tjunca, I wondered the same thing. We are all different and no two people will have the same recovery. That being said...I was told it would be difficult to raise your arms up to pull on a shirt over your head. That was true, but only for maybe a week. I was able to pull a t-shirt on, just really slooooow, the day I went home. It just feels uncomfortable. They don't want you using your arms much, and lifting anything over ten pounds is a no-no for at least 4-6 weeks. The sternum needs to rest and heal, and if you are one of those people who think it's okay to do whatever you want, you could end up with a gnarly looking scar! I know someone this happened to, and she was not happy about it. It stays like that the rest of your life. So protect your sternum is the mantra to say to yourself over and over.

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That’s exactly the info I was looking for! Thank you for telling me that. I feel I can deal with things better when I have an idea of what to expect. Thanks again!

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Profile picture for tjunca @tjunca

I am on Camzyos and decided to have surgery later this month. Mayo Clinic said to stop Camzyos 2 weeks before surgery.

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Thank you for your quick reply. Much appreciated. Wishing you a good recovery!
I’m guessing Camzyos did not provide relief.

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I know this is probably not serious but,
has anyone noticed bad smelling urine after taking these for the first three days?

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Profile picture for tjunca @tjunca

I’m wondering how long will I need button down shirts before I can lift arms to dress.

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Hi @tjunca, I wondered the same thing. We are all different and no two people will have the same recovery. That being said...I was told it would be difficult to raise your arms up to pull on a shirt over your head. That was true, but only for maybe a week. I was able to pull a t-shirt on, just really slooooow, the day I went home. It just feels uncomfortable. They don't want you using your arms much, and lifting anything over ten pounds is a no-no for at least 4-6 weeks. The sternum needs to rest and heal, and if you are one of those people who think it's okay to do whatever you want, you could end up with a gnarly looking scar! I know someone this happened to, and she was not happy about it. It stays like that the rest of your life. So protect your sternum is the mantra to say to yourself over and over.

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Profile picture for daral @daral

Yes Canada. Yes to drug name
Pretty much 39 years ago. Then it was apical hypertrophic Now that appears to have been wrong ( 37 years on verapamil…never any symptoms) or progressed to ventricle. Got a pacemaker / defib last year . Ben on Camzyos for five days. Not noticing much but have not tested my endurance etc.

I could still crawl under neath cars in and out 10 times in a 40 minute span with no effects before i started camzyos. Am i expecting too much ?

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It was 4 weeks before I noticed the benefits.

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