← Return to LVOT peak systolic gradient up to 19/35 from 12/13 Dr. raising Camzyos

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@jmr091805

thank you @walkinggirl. For all of your comments here to which I always look forward. You are so right: HOCM definitely is not a static condition. It is inevitably progressive. And it seems like a relatively new challenge to treat by cardiologists. Camzyos is a bit of a miracle but its helpfulness also is not consistent. And there's another drug in the pipeline. Surgery does not halt further problems. Many have had the surgery and then the progression of the thickening of the heart walls continues until yet another surgery is required. Or they just die. All of this is a recent, sudden change in my life. I knew I had HCM for a few years and was asymptomatic and it seemed irrelevent, but HOCM seemed sudden and is new as of January (when my heart started obstructing blood flow and I had the chest pressure and shortness of breath both very serious). So many other risks like sudden cardiac death, heart failure from Camzyos etc. I think the real challenge is how we handle it all emotionally. Having loved ones and perhaps a psychologist seem essential.

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Replies to "thank you @walkinggirl. For all of your comments here to which I always look forward. You..."

Please be sure that your cardiologist is well versed in HCM and HOCM. Many cardiologists seem to know little about HCM, there are stories in the blogs of misdiagnoses and the like. Mayo has been doing septal myectomies since 1959! Drug ads and young sudden death from a "heart complication" have made the public a little more aware that HCM exists. From what I have asked my cardiologist and the comments made by others in the blogs, it's rare that the thickening returns after a septal myectomy. "Surgery does not halt further problems." Yes, that is true, and it took about 4 months to get to the bottom of one of mine. It's the "art of medicine" and once the problem was solved, life is very normal and active. Like you, my HCM was asymptomatic for years and suddenly it was not. The emotional part is a definite challenge; I am impressed by the comments made by people scheduled for surgery this and next month in the What I Learned From My Open Heart Surgery blog.