HCM-ers: Introduce yourself or just say hi

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! 😊

I do have a couple of suggestions. I know how scary the thought of open heart surgery is. I was freaked out!! But I knew I was at the best place on the planet. I came from Northern California to Rochester, MN, and brought everything in a carry on.
Pull on pants. It was really helpful to have pull-on pants. Before surgery there is a lot of testing, so I was grateful for some easy on, easy off clothes. I chose linen pants, as it was July. After surgery, you are swollen. So forgiving, elastic-waist pants is a must!
Slip on shoes. After you get out of the hospital, you will be pretty beat up. Having slip on shoes so you don't have to bend over is helpful.
Pull on lounge-type bra. Oh boy! You don't want underwire, and you can't reach around to hook a bra. Being able to step into, and pull up a soft comfy bra was so wonderful. I went to TJ Maxx and bought a couple of 2-packs of them and was ever so glad I did.
Soft wash cloths. One of my discharge instructions was to use a clean wash cloth and liquid soap in the shower, every day. So I got Dr. Bronner's peppermint soap and a 10-pack of wash cloths from Ross. The sternum is pretty tender for awhile so I barely even touched it, more like patted with the soap and cloth.
A reclining chair. If you don't have one, you'll survive, but it was helpful for about a week. My significant other went out and bought me one before we left. It was electric so I didn't have to use the lever on the side. That would have been impossible!
Support person. You will need a support person for sure. You can't drive for a month, so you may be able to walk around and do small things, but you will need someone to drive you.
Nutrition. It's good to have some healthy foods available after you get home. Proteins are good for healing. Your appetite and taste buds are messed up. It takes a week or so for things to even sound good. I was in love with rice with butter for awhile. Strong, spicy food sounded awful!
Walking. Walking as much as you can is the best thing for you! But it is not easy for at least a month to get in or out of anything! The chair, the car, the bed, the toilet...any time you have to use your arms. It takes a while. I could not reach to close my car door for months!
Attitude. You are embarking on something that everyone wants to avoid at all costs! You are already braver than you know, and stronger too. Just making the decision to do this takes immense courage and faith. I put it all in God's hands and fully trusted Him and the Mayo team. There was a lot I did not anticipate. Any surgery has pain after, so that I was not caught off guard with. But I was not prepared for the intense stay in ICU. That is why it's called "Intensive" care unit. I had a hysterectomy a few years before this, so I knew a little about staying overnight. I was in five days. I hardly slept. The pillows were like rocks. The bed a joke. The food was terrible. They come and check at all hours of the day and night. You will want out ASAP!
Nurses. They are like angels on earth. They make everything I just mentioned above that is awful, just a little better.
Listen to your body. If you need a nap. Take one. Push yourself, but not too hard.
I hope you were able to get through this long post! If you did, and you have any other questions, please! Ask! I'm here to help if I can. I do know that Rochester is where the top HCM doctors practice. I am not familiar with Jacksonville, but if it's Mayo, it has to be good.