HCM-ers: Introduce yourself or just say hi

As you will see I was quite unwell on it but we are all different. I take Verapamil twice daily of 80mgs could that be a side effect, who knows....Also very confused. Good luck on your journey.

Thank you so much for your reply. It's really helpful to hear your experience as we do have many similarities. It's amazing how much better you are. When you started taking it did they reduce your metoprolol? Did you fly at all in the first few months on Camzyos? It sounds like yours was worse than mine mine's about 50 with Valsava. I'm worried it will go down too much and my heart will stop! I'm 76 yrs old and am an author and travel to teach. I teach Buddhism and have many students around the world. I am currently scheduled to tour in UIS and Europe this year. If I start Camzyos I have to cancel my travel and teaching schedule and my students would be really disappointed. So I'm weighing the need for the medication with commitments I have made and can't figure out if I could wait til I finish my commitments (Dec) or if I should cancel. I find long flights prticularly hard and use an oxygenator. I can't drink alcohol since I started Metoprolol I didn't feel good. I can walk u stairs and hills and ride my bike.

Camzyos changed my life. I am very sensitive to drugs as well. I was nervous to try it and my cardiologist gave me great information to help me feel confident in starting Camzyos. I have been on it for 9 months now and had a few difficult moments when I didn't feel well. I am currently on 15 mg once a day and my Valsalva went from 86 to 19. (lower than 30 is normal) I feel better and am able to walk regularly, read out loud to students without losing my breath and generally function at a higher level. (i used to have to park very close to the entrance of a building, couldn't use the stairs, and absolutely could not walk uphill) I take Metoprolol 75 mg twice a day. I travel a fair amount and my heart feels way better now as i fly. I hope you find the information you need to try Camzyos. It really is a hassle to have an ECHO so often as they track your results, but I have found the effort quite worth my results. Since we have so many similarities, I want to add that I am 61 years old, work full time , do not drink alcohol or take any other drugs except my heart meds. I hope my experience helps you. I find the MAYO clinic blog very helpful on this journey.

Hello there @katiekins,
With the septal myectomy, the O in HOCM is gone...the obstruction...but we still have HCM. I also had severe mitral regurgitation and aortic valve stenosis. That's what my cardiologist told me.
When the surgery was over...these were not my diagnoses at all. It was all due to HOCM.
My septal thickness was not so awful either...but when Dr. Dearani came to talk to me after surgery, he said I had severe HOCM. It's such a weird condition. Some days are great, some days are so difficult. Sometimes your echo looks pretty good, sometimes Valsalva is not bad. I
was prepared to have valve surgery too...but it was fine.
Thank goodness you stopped taking a drug you didn't need!
When you mentioned minimally invasive mitral surgery, do you mean TAVR?

Morning, I have been a member fir a while now but why do I have to keep signing in everytime?

Does that mean that once a septal myectomy has been performed one no longer has HOCM? I have just been told after about 15 yrs that HOCM isn’t really my problem as thickening is 1.6mm too small to operate on but my mitral valve is the problem as valsalva is over 100 upon activity. Waiting for minimally invasive mitral repair or replacement. So all this time I feel I have been mislead. I am not that bad a case and function normally but mornings are the worst for lack of energy and also exhaustion after eating,
Now I know why Camzyos made me feel awful it was the wrong drug for me! Happy though that it’s a miracle worker for some people. Keep well all.,

Hello karukgirl!!
Yes, they put referrals in to both MN and AZ, and AZ is the one who responded.
I saw Dr Cannon. He really just went over the symptom options, none of which I was ok with. He did increase my Metoprolol dose to 25mg twice a day, and that made a huge difference, even after eating.
I understand how the eating plays a role with the breathlessness, all the blood going to digestion and none left for an hour or two after eating certain things or too much.
I can really mitigate any symptoms by staying hydrated, planning ahead my eating schedule with what I am doing.
I almost never sit down!! I am busy and active every day. Tons of energy and I love the outdoors.

https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Hi @joanallione, I see you are new around here...welcome!
Have you poked around in the Camzyos group? There is a lot of information this group shares with each other and it's a good place to find answers to some of your questions.
I had HOCM until I had open heart surgery (septal myectomy) at Mayo Clinic/Rochester nearly four years ago. I found your comment about moving from the mountains interesting. I have always been an active person and hiking with one of my girl friends was a favorite pastime of mine. Even though our mountains are not like the mountains in CO, we'd be around 7,000/8,000 elevation and I felt like I was going to die! It's hard on a hypertrophic heart sometimes.
I am glad you like your doctor and it sounds like she is knowledgeable about Camzyos. Any drug has side effects. And we would probably not take any of them if we only went by what could happen...but the benefits can outweigh the risk too. HOCM is a weird condition. There are so many variables and no two people are alike. But we do share a lot in common as well.
Do your research and be well informed, then make your decision along with your doctor. Sometimes it takes more than one opinion to find the right fit you feel comfortable with. Are you able to be active physically with your HOCM?