HCM-ers: Introduce yourself or just say hi

Hi @don69, This group has been invaluable to me, particularly when I was making the decision to start Camzyos and then subsequently when I was frustrated with my Dr.

You have every right to be nervous. It's still a fairly new drug. It was even newer when I started. I have been on it for 14 months.

I would recommend that you do your research and then follow your heart/ have faith. It's important that you be informed so you can be your best advocate. Know your options.

The drug has been highly effective for many in this group, giving them a new lease on life. For me it has not been as life changing as I had hoped. I still have shortness of breath and a high heart rate upon exertion. I am going to Cleveland Climic in 2 weeks for a more through evaluation. Mayo was harder for me to get to. Next week I am having a new MRI that NHI is developing to examine the heart under exertion.

I may end up having open heart surgery. But, I decided to give Camzyos a try as an alternative first.

Only you can make the decision on how to tackle your HCM. But remember, nothing beats a failure but a try. Good luck! We are here for you.

are you on Whidbey Island? i have a lit of friends and students there. just wondering…Do you go up to higher altitudes like over 5000 feet and if so hows your heart at those altitudes?

Hi @don69, and a warm welcome to Mayo Clinic Connect!
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
I do not know if you have had an opportunity to poke around here on Connect or not, but I have posted a link to the Camzyos support group. This is an amazing support group and you can learn a lot from them. I would highly recommend you reading some of the posts there.
@kelliw and @jaymaysea are two Camzyos troopers! I hope you read their stories.
I think anyone would be anxious about starting a new drug, so you are totally not alone. In fact, you are in the best company here on Connect. Check out the Camzyos link I sent.
Were you just recently diagnosed with HOCM (HCM with obstruction) or have you known and are now symptomatic enough for Camzyos?

I am on 2.5 Camzyos. I started on 5 mg and they moved me down, which I wasn't happy about at first, but am doing fine on it. I started March 2023. I was in REALLY bad shape when I started taking Camzyos and it has given me my life back. I am so thankful! I will look up my gradient.

I went to Steamboat, CO, last summer, which is 6900' and took the gondola up to close to 10,000' and felt fine. I didn't go on any hikes, but went on a white water rafting trip and floated down the Yampa river though. I hope this helps. 🙂 Enjoy your trip!

Does anyone with HOCM have issues with going up to higher altitudes like over 5000 feet?Im going ti 8000 ft… if so how do you deal with it. I was recommended diamox…

It sounds like you have a very full life in your current condition, so I understand that would make it hard for you to change your course of action midstream. For me, it would be about quality of life. If you feel strongly about keeping your schedule and traveling to teach, go for it! You seem to have found a way to be comfortable enough to pursue your passion. (You did mention having to use oxygen on long flights which seems limiting, but not impossible to manage) I did fly each month that I have been on Camzyos , felt great, and have never used oxygen. Camzyos will be here when you return. I do know that once you are approved to use Camzyos, it is a one year benefit and is approved for that time frame only.

You asked about my Metoprolol use. I had to increase my Metoprolol when I increased Camzyos to 10 mg. I take Metoprolol for Mitral Valve Regurgitation.

As per your concern about your heart stopping. I was assured by my cardiologist that anyone approved for Camzyos meets a certain criteria and the way I receive an ECHO every 22 days, then meet with my cardiologist helps me feel like I am being tracked very closely. I do not believe they would approve you without believing you were a great candidate for the medicine. As a matter of fact, after talking to the nurse at the Mayo Clinic's Hypertrophic Cardiomyopathy office in Scottsdale , AZ, I learned that nearly all of their patients on Camzyos are experiencing results similar to mine. That is so encouraging. (I am a patient at the U of W in Seattle) I would love to hear more about your experience in the future.