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← Return to HCM getting worse?
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I'm 71 and have had symptoms for 20-30 years, gradually worsening. I avoided being honest because I didn't want there to be anything actually wrong as I am fearful of medical interventions and dislike taking medications. Based on a worsening heart murmur, I had an ECHO that showed severe mitral valve regurgitation and other signs of HCOM...I was completely shocked & really fearful at that point. However, I've been on Camzyos since 8/2024 with great results. Heart murmur is barely audible and I rarely have any symptoms. My fears turned out to be groundless and I am so grateful that I now understand why I've felt the way I did. I can only repeat what others emphasize and that is to make sure that you see a cardiologist that is a HCOM specialist.
Replies to "I'm 71 and have had symptoms for 20-30 years, gradually worsening. I avoided being honest because..."
What an encouragement. I may be started on Mavacamten (Camzyos) soon.
Your success story is wonderful.
@mpjg Thank you for words, they are encouraging, I am sure my card team here in Louisville do not have experience with this, so I am scheduled in Cleveland in March, even if I feel better by then on Camzyos I am going for the whole workup there. I just found out I also have "severe left atrial dilation". One cardiologist didn't say a word about it, no one mentioned it until I brought it up to the NP at the Heart Failure Clinic, and she said, oh yeah, that's a completely different condition and it's very serious, and your cardiologist should have taken care of that, another one told me, yeah that's cause by the HOCM with SAM and it should have been addressed as well..... ugh, I feel like I am having to do everything myself for them. They don't have the experience here. I just want to start feeling better and stop being told I am at high risk for sudden cardiac death due to the gradient of 214... Im sure time will make things better but today I feel defeated.
@mpjg love your positive energy, I wish I could get more of that. I have a good day and bad day. On the days that I have severe dizziness i cant do anything and I am so miserable just getting up from sitting down is horrible, then it turns into nausea, then I also had the side effect of stomach issues with HOCM for a year before I was diagnosed and it was torture. I have been on camzyos for a month and everything but the dizziness is a little better on certain days so Im glad about that. I am trying to be patient and give the medication a chance to work. I am having my first ECHO after starting the Camzyos on Monday and looking forward to seeing how that comes out. Thanks for you positivity
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Interesting. I was diagnosed with HCM 6 years ago just before I turned 65. I've never heard of Camzyos, don't remember either cardiologist I saw mentioning it either. My symptoms were getting worse so surgery was recommended for me. I underwent open heart surgery in 2023 ( I just turned 71) and it made a huge difference. Is Camzyos a new drug? I'm in Canada, maybe it's not available here.🤔