HCM-ers: Introduce yourself or just say hi

Which gradient would be helpful? I am still not sure what all of this means.

Hi Colleen. I am a heart patient with a twenty year history of heart issues. I have had a heart attack, double bypass, have 11 stents and last summer had an aortic value replaced. On July 5, I visited my cardiologist and was told that my total cholesterol was 91 and triglycerides were 170 which is down from over 300. Then on July 10 out of the blue I had terrible heart pain that two nitros didn’t relieve. Bottom line I was diagnosed with bradycardia and some QT prolongation. I was put on Florinef .1 mg and Lexapro dose was cut in half to 10 mg. I am so frustrated because I have been so active in recent months and now this.

Hopefully all turns out well for you.

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!