HCM-ers: Introduce yourself or just say hi

Welcome to Mayo Connect, Daral from Ontario! I assume you mean Ontario Canada, not Ontario, California! You mention you just started this week...I am going to assume again that you mean Camzyos? If so, maybe take a look at this:
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
This is the support group of the HOCM'rs who have started on Camzyos. There are many wonderful folks in this group who share their journey with those who just started too. It's a relatively new drug with good and not-so-good results, because we are all so different.
When did you learn you had HOCM? Did it take a long time to be diagnosed?

Jump to this post

Thank you so much for all this information and all helpful tips to help me prepare! Like you, Ive had a hystectomy as well as gall bladder surgery and appendectomy - so no stranger to surgery and recovery, but I know this is going to be a whole other level! Im surprisingly calm/at peace but Im sure once I have the date, reality will hit! My biggest worry is waking up intubated in ICU… I know I’ll want that out stat! I dont like taking pain meds as they make me nauseous but not afraid to ask if its bad. Ive already inquired into an electric/lift recliner to help me get up. Did you need a walker at home? Thankfully Im in a ranch so no need to take stairs. How long did you stay near hospital before heading home? I’ll know more after the 21st and will you posted! Thank you again! 😊

Jump to this post

Daral. From Ontario. Just started this week. Not seeing any great difference

Jump to this post

Hi. I started Camzyos in May 2023 and felt better almost immediately. I could walk without angina. I continue to have more energy - daily aquafit, walking, yoga - and stopped needing a daytime nap after a couple of months on Camzyos. However my gradient is barely responding. I convinced my doctor to increase the dose from 5 to 10 mg. Started that in August. Gradient decreased from 131 to 117 - both numbers very high and my doctor says it is not a significant drop. She continues to push for myectomy. I want to try 15 mg camyos- really really do not want surgery. I am 74.

I also have reflux and can't tell whether my symptoms - which got worse in the last couple of months - are from GERD or HOCM. I am going to treat the GERD aggressively and hope for the best!

Does anyone know how long one has to be off camzyos before surgery?

Jump to this post

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 ?

Jump to this post

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

Jump to this post

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

Jump to this post

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.

Jump to this post