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DiscussionHCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: Aug 26 9:56am | Replies (870)Comment receiving replies
Replies to "Hi, after many years of heart issues, including stress cardiomyopathy, and being misdiagnosed with microvascular heart..."
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?
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
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.