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@nbs

Your description sounds just like mine in the sense that I thought I was "healthy as a horse' until I was diagnosed with symptomatic obstructive HCM in Sept. 2022. I am almost 68. I have now been on Camzyos for almost 4 month. I have always tried go for a 3-4 mile walk every day but found each year my symptoms were getting worse which involved not being able to walk up any incline or stairs, without having to stop and regroup, chest pressure, etc . This would come and go. Echos show that my septum is partially thickened and that partial area doubled in one year but is not thick enough to allow surgery. Once on Camyzyos my LVOT went from 101 and has settled at 24. My EF is still at 74. However, I have never had any other heart issues as in arrhythmia, no other thickening of any of my heart walls, normal chamber pressure in the rest of my heart, etc. And for all of these reasons minus the obvious diagnosis of OCMO my cardiologist strongly felt that I would be a perfect candidate for Camzyos. I have had no real side effects once they adjusted my dose for 5 MG to 2.5 and haven't felt this consistently great in years. If you have the time read through this thread. Very few people have the same heart issues. My cardiologist is at Washington Univ. where they were and still are part of the research for Camzyos and have a division in cardiology just for HCM. I had genetic testing which did not show that I have the gene but the research cardiologists think that it is always genetically linked. There are many gene sequences they can test for HCM and the most common one they used for me did not match but that doesn't mean I don't carry the gene. I am excited for you and it sounds like you are in terrific hands. My feeling is that we are all very lucky that this research is going on now and even if our children have the gene and display symptoms for HCM they will be treated earlier and with more knowledge.

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Replies to "Your description sounds just like mine in the sense that I thought I was "healthy as..."

Thank you so much for sharing your detailed description of the condition we share. It really helps to know others on this path. I do hope that backpacking (even a little!) with my son is still in my future!! Take care. Glad you have a good medical spot in Washington,

This is what is so special about Mayo Connect @nbs! Your willingness to share with @newtosohcm your information and helping who knows else that may be reading! A lot of us have such similar stories...I too was super active and healthy. Hiking every week, walking 6 miles each day, ballroom/swing dance lessons for three hours...and then I couldn't. Thank goodness for being in good health aside from HOCM. I am 65, diagnosed at 61. I thought I would never be able to do what I loved, but a septal myectomy gave me back my life. I am probably not every going to be like I was prior to HOCM, but I am so much better, and blessed to be living at all. Thank you for sharing. I know each Camzyos story is different, and yours is positive and I appreciate how willing you are to share with others just beginning Camzyos. Again, that is what makes this support group so special. No where else in the world will we find a place like Connect to do just that...connect!! Thank you for sharing 🙂