HCM-ers: Introduce yourself or just say hi

@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.)

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

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

Hello @jaymaysea , welcome. You have come to the right place to ask questions and get information about Hypertrophic Cardiomyopathy. This is not the kind of site that gives out medical advice, only opinions as it is made up of patients, just like you and me. It is never wrong to seek information, ask questions, do your own research and be your own advocate. Unfortunately, HOCM (Hypertrophic Obstructive Cardiomyopathy) is not all that common, and a lot, like I mean a lot, of cardiologists are just not familiar with it. Hence you being misdiagnosed in the beginning. The Mayo Clinic is a leader, along with other Centers of Excellence (COE), that are familiar with, and experts in treating HOCM.

I do not blame you for being fearful and not knowing what to do. You have two contrasting opinions. Only you and your doctor can decide what is the best course for you, and ultimately, you get to make that decision. In my case, I was misdiagnosed for several years with a murmur, SVT, this or that, and told to drink more water...leading up to yet another misdiagnosis of Sub-aortic Membrane. I needed surgery! What?! I was just told to drink more water! So I understand your dilemma. Who do you trust? I ended up asking for a second opinion outside of my smallish community, and also was given contrasting information. I ended up at the Mayo in Rochester. I knew instinctively I was in the right place, even though they said I needed open heart surgery. It was certainly not what I was expecting to hear.

To say I was stunned would be an understatement.

This was very shortly before Camzyos was available. You will read here on Mayo Connect that there are many fellow HMC'rs out there trying Camzyos for the first time. Yes, it's scary to try a new drug because every drug has side effects. Even everyday, plain old aspirin has risks. And obviously so does open heart surgery. I encourage you to keep reading on here, ask any questions you want and always remember you are in control and have to make the decision that is best for you. @colleenyoung is a fountain of information and I would ask that she steer you to places on Connect to find more information. You cannot do yourself harm by being more informed! When do you see your cardiologist(s) again? What questions do you have for them? Have you thought of seeking outside input from a COE?

Thank you so much for responding and giving me your insight. This is all really scary. So hearing from others means a lot. Jenna

Hi Jaymaysea,
I'm always in favour of trying something less invasive first. Everything has risks and you have to make peace with that, and decide for yourself what's right for you. As it was explained to me by my specialist, Camzyos has about a 5% chance of relaxing the heart too much which can result in heart failure due to insufficient pumping if continued . This is why we go for monthly echo cardiograms to ensure all is well. I was also told that of those 5% who had issues, no mortality occured and stopping the drug completely reversed the negative effect.
I had a short gap in presecription due to a communication mix up at the end of April and the beneficial effects of Camzyos started to wear off by the 5th day, I would presume this time would be similar if you stopped taking it due to a negative effect.

Hi, after many years of heart issues, including stress cardiomyopathy, and being misdiagnosed with microvascular heart disease, I was recently diagnosed with obstructive HCM. My specialist cardiologist has recommended Camzyos. My other cardiologist has said she doesn’t understand how Camzyos works and thinks I am headed to open heart surgery. I am afraid of Camzyos since it’s still in REMS and can cause heart failure. Really don’t know what to do? Should I just go straight to surgery or try Camyzos? Any input would be great appreciated.

Hello @john67 , you came to the right place if you are looking for information about Hypertrophic Cardiomyopathy. It sounds like your cardiologist has enough information to at least give you three options, as you say. I'm glad your cardiologist recommended a Center of Excellence for treatment. This disease needs top of the line medical input and if necessary the best surgical team available. It is overwhelming at the beginning, I feel, because it seems most people with this had no idea this was lurking inside their heart. They were mostly fine, bumping along with a garden variety heart murmur or some SVTs and then it seems like all of a sudden you notice you can't breathe, your heart pounds like a turbo charged diesel Cummins motor, and even simple chores make you short of breath. You get dizzy, feel fatigued and have brain fog. I kept telling myself I get dumber everyday! I don't know about you but I just sluffed it off to generalized aging. It came on gradually but seemed like it just got worse really fast. Each person is different, of course, but a lot of us share the same symptoms too. Then there is the whole genetic factor. Where did it come from, could any siblings or children have it too? Have they told you if yours is obstructed? If you don't mind sharing, what were the three options you were given? On Mayo Connect, you never know who may see your post and be helped by your story. Keep reading and researching. You are your own best advocate!

Hello Colleen. Thank you for the welcome. In 2009 and 2019 I had heart ablations for afib. There was no mention at those times of HCM. There was an Air Force cardiologist that first mentioned my HCM around 2021. Since my ablation in 2019 I have been short of breath, having difficulty walking up stairs, light-headed, dizzy. I sought out a cardiologist in 2022 who confirmed by HCM and recommended I go to a Center of Excellence. Being from South Mississippi the closest center is Houston Methodist. My cardiologist there ran the usual test, MRI, echo, stress test to confirm my diagnosis. He has now giving me the three options for treatment. This was only last week. So, I am beginning my research as to which option would be my best.

Welcome, @john67. You've come to the right place to learn from other HCM-ers. I'd like to start by getting to know a little about your HCM journey. When and how did you learn that you had hypertrophic cardiomyopathy? What treatment or surgery have you had or are you exploring options at the moment?