1. < Hypertrophic Cardiomyopathy (HCM)
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HOCM & 8th month on Camzyos...how long will Camzyos work?

Posted by jmr091805 @jmr091805, Nov 27, 2025

My HOCM became obstructive at the beginning of 2025. Started Camzyos shortly after. Now 8 months on it. Whenever I have stress, chest aches. Working at meditation. I wonder what the statistical likelihood is that I can take Camzyos for many years or for life (or what's left of it---I'm around 60 and also have cancer and apparently a small brain tumor they just found among many other medical problems) and be ok and never need surgery or have other heart problems connected to this.

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Linda, Volunteer Mentor | @walkinggirl | Dec 4, 2025
In reply to @mbharris "@brumasterj Glad to hear the surgery helped and hope he can help you with the sternum...." + (show)
Profile picture for mbharris @mbharris

@brumasterj Glad to hear the surgery helped and hope he can help you with the sternum. Surgery date Dec 10. I watched a video yesterday with Dr. Dearani, who will be my surgeon, and he comes across like he truly knows his stuff! Hills, stairs, and now being off Camzyos for a weeks has flat surfaces behind an issue. I’m so ready to back to normal.

Question for you. How was sleeping post surgery when you got home? I’m a side sleeper and concerned that I will be struggling to get a good night sleep. Can I lay on my side? It looks like will need to elevate for a few weeks is that true.

Another question, how much walking/exercise have you been doing at home. Should I look to push myself to build up my endurance? Trying to understand what I should focus on?

Appreciate all your insight and hope things go well for you.

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@mbharris I slept in a recliner because it kept me on my back and it was easier to rise when I needed to go to the bathroom. Sometimes your best solution comes up through trial and error. You are in good hands!

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brumasterj | @brumasterj | Dec 4, 2025
In reply to @mbharris "@brumasterj Glad to hear the surgery helped and hope he can help you with the sternum...." + (show)
Profile picture for mbharris @mbharris

@brumasterj Glad to hear the surgery helped and hope he can help you with the sternum. Surgery date Dec 10. I watched a video yesterday with Dr. Dearani, who will be my surgeon, and he comes across like he truly knows his stuff! Hills, stairs, and now being off Camzyos for a weeks has flat surfaces behind an issue. I’m so ready to back to normal.

Question for you. How was sleeping post surgery when you got home? I’m a side sleeper and concerned that I will be struggling to get a good night sleep. Can I lay on my side? It looks like will need to elevate for a few weeks is that true.

Another question, how much walking/exercise have you been doing at home. Should I look to push myself to build up my endurance? Trying to understand what I should focus on?

Appreciate all your insight and hope things go well for you.

Jump to this post

@mbharris i will be honest with you sleeping is rough for a few weeks but you will get thru it each night and each week. Im a back sleeper occasionally will roll over to side, you will be awakeded for the first few weeks each time you transition, i didnt take any pain medication hate the way it makes me feel.
Walking they want you doing that for sure, you will be up walking the next day after surgery and then building your stamina! Within two weeks i was up to 2 miles, then had to back off plantar fascinates flared up! First 3-4 weeks you will be exausted doing the smallest things so listen to your body and take those naps! Let people help you do things!
Dr Dearani did my surgery and will do my sternal wires next week.
Your gonna love the hospital team, they are the best!
Been 6 months and I still remember there faces and names, unforgettable!
If your married your spouse will feel the same about the team!
Best of luck
And just remember the pain and suffering is short lived but so worth it!!!
Cant wait to hear you out there getting after it again

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rebaheizer | @rebaheizer | Dec 4, 2025
In reply to @mbharris "I just got off Camzyos 4 weeks ago with being on it for 1 year and..." + (show)
Profile picture for mbharris @mbharris

I just got off Camzyos 4 weeks ago with being on it for 1 year and 8 months. It great in reducing my HOCM symptoms and allowed me to walk with more exertion. I still though had ongoing symptoms with activity. At 54 I have decided to go through Septal Myectomy surgery at Mayo to get closer to a normal state. After 3 weeks of stopping Camzyos my obstruction came back STRONG with breathing and chest pain while walking and more so when exerting. My cardiologist maxed my Bystolic to help, which it has but I still have symptoms both not the strong chest pain of earlier.

So Camzyos worked but I was concerned with staying on it long-term and the ongoing need for medication monitoring and adjustments. Considering surgery is a big step but feel getting it done at my age will be worth it. Good luck and hope everything goes well.

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@mbharris I was only on Camzyos for three months and my ef dropped to 30! This was very traumatic for me. I don’t think I would ever be comfortable taking it again. I have had bypass surgery in the past and I am not afraid of a surgical option. The more I read the more I feel surgery is the best option. I’m 63 and I don’t want to wait until I am unable to deal with it.

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cash298 | @cash298 | Dec 13, 2025
In reply to @mbharris "I just got off Camzyos 4 weeks ago with being on it for 1 year and..." + (show)
Profile picture for mbharris @mbharris

I just got off Camzyos 4 weeks ago with being on it for 1 year and 8 months. It great in reducing my HOCM symptoms and allowed me to walk with more exertion. I still though had ongoing symptoms with activity. At 54 I have decided to go through Septal Myectomy surgery at Mayo to get closer to a normal state. After 3 weeks of stopping Camzyos my obstruction came back STRONG with breathing and chest pain while walking and more so when exerting. My cardiologist maxed my Bystolic to help, which it has but I still have symptoms both not the strong chest pain of earlier.

So Camzyos worked but I was concerned with staying on it long-term and the ongoing need for medication monitoring and adjustments. Considering surgery is a big step but feel getting it done at my age will be worth it. Good luck and hope everything goes well.

Jump to this post

@mbharris See, this is my concern, its life long in this Camzyos process or surgery. I would rather do the surgery

REPLY
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mbharris | @mbharris | Dec 13, 2025

Everyone is different but I feel going through surgery will be better. I’m currently 4 days past surgery and still recovering but feel better, my gradient was over 70 and prior to surgery had a hard time even walking with exertion. I think longterm it be better. Good luck in your journey.

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