HCM-ers: Introduce yourself or just say hi

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 ?

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?

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

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! 😊

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?

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

Yes @cwarren29860, please keep me posted...I will virtually hold your hand and share any tips I can think of that I haven't already.
So, no walker for me. I was in really good health except for the HOCM. I was very active and that helped me in recovery. The recliner I could have done without, but my man thought it would be easier for me. We stayed in Rochester an extra three days. I was able to go to a post-op appointment. I would have been fine to come home a day (or two) after discharge, but since this was my first open heart surgery I was super cautious. I think the thought of open heart surgery gets us so hyped up, and even though it is a big surgery, it's not as horrible as we make it. Don't get me wrong...it is not fun and there are some tough moments, but each day gets easier and easier. And getting your life back is priceless. I cannot imagine living with HOCM like I was. I feel like a new person and am so grateful.
The ICU stay and pain med thing is definitely difficult. I took half of a half of one pain med. It made me itchy and so from then on it was extra strength Tylenol. Which did nothing for me. Do not be afraid to ask for pain meds. I still marvel that all I got was Tylenol. They have a strict pain med policy.
I look forward to hearing back from you after your appointment. I'll be thinking of you!
Debra

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! 😊