HCM-ers: Introduce yourself or just say hi

It would be hard to not be anxious @avcowie, and especially if you are not feeling well. I hope the day gets better and tomorrow you feel much relief going forward. Having crazy heart beats would cause anxiety for sure. Are you able to contact your doctor if you have serious concerns about your reaction to Camzyos?

The plan is to try the Camzyos for the next three months and see if it truly helps with all my symptoms. If not I’ll be on the surgical route with a mitral valve surgeon and HOCM surgeon taking turns at fixing my heart.
It’s only my first day taking the medication and I’m not feeling well at all. Bloating stomach, headache, back pain, fatigue and ringing ears. I’m monitoring my ecg on my Apple Watch and it’s pretty wild. Trying to not get too anxious about it.

Welcome @avcowie! You will find a lot of information about HOCM here. I see that you are already off to a good start in the Camzyos discussions. That's great, because there are fellow HOCM folks and fellow Canadians there too! I see you asked a question too about mitral valve involvement. It sounds like you were caught off guard during that visit. Do you know what your next steps are? It is super important that you are being followed by an HCM expert, do you know if your cardiologist is skilled in HCM? Is your plan now to try Camzyos, no surgery?

Hi everyone,
I’m a 56 yo woman living in BC Canada. I have had symptoms since my mid 20’s and in my 30’s finally had a Doc that asked for an ultrasound but nothing showed up. Then decades of worsening symptoms and episodes with visits to the ER and finally called Telus Health and told them I needed a referral to a cardiologist. When I was diagnosed I was happy to get confirmation that it wasn’t all in my head. Now the hard work starts… I have pretty severe symptoms now and going to try Camzyos starting next week. Any advice for me?

I feel so much better after taking Camzyos they have me getting an echo every month to make sure your not going to have a heart failure a pill is way less invasive then open heart surgery

@jaymaysea, I add my welcome. I also subscribe to your “trust by verify” approach to life. Member conversations on Mayo Clinic Connect offer experiences that can lead to further investigation and informed choices.

From what you've shared so far, I think you'll also be interested in these related discussions:
- Anyone take new drug Camzyos (mavacamten) for HCM? https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
- Video with specialists at the Mayo Clinic HCM Center about the disease, myectomy and screening (predates Camzyos as a treatment option, but good explanation) http://medprofvideos.mayoclinic.org/videos/hypertrophic-cardiomyopathy-and-treatment-options
- HCM CARE tips - What do you wish you had known after surgery? https://connect.mayoclinic.org/discussion/hcm-care-tips-what-do-you-wish-you-had-known-for-after-surgery/ (This is an older thread, but a goodie.)

Thank you for taking the time to respond to me. You make an excellent point about the risk. I have also been told that the most critical risk, heart failure, is reversible once you stop taking the medicine. Is there any information on any side effect that is not reversible?

One of my cardiologist is the medical director for the Hypertrophic Cardiomyopathy (HCM) clinic at MedSTAR Washington Hospital Center (WHC) in Washington, DC. They are affiliated with Cleveland clinic. But I don’t think WHC has the COE designation. Today, because of you (thank you), is the first time I became aware of COEs.

My WHC cardiologist is involved in clinical research for investigational medical options to treat hypertrophic cardiomyopathy. So he has the ability to prescribe and monitor Camzyos. He is wonderful and appears very knowledgeable about HCM. I was referred to him by my regular cardologist that admits she is not knowledgeable and appears leery about Camzyos, which I believe is why she indicated she thinks I am headed to open heart surgery. But, at least she helped me to get an accurate diagnosis by referring me to the specialist at WHC.

I am an attorney so I have a “trust by verify” approach to life. So I joined Mayo Connect to hear about the experiences of others and get information I am not aware of so I would know what questions to ask.

My insurance company gave a one year authorization in March. I am currently still going through the Camzyos cost determination process. It has taken longer than I thought it would.

Now I am wondering whether a COE would tell me anything different than I was told at WHC. I think it’s likely they would tell me to try the Camzyos and see if it’s well tolerated and if not consider surgery. But, maybe not.

My next in person cardiology appointment would be one month after I started taking the Camzyos. However, I have the ability to ask my cardiologist any questions using the MedSTAR internet portal anytime.
Again, thank everyone for their openness and insight. Jenna