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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: Aug 26 9:56am | Replies (870)Comment receiving replies
Hi, my name is Hans and I'm 59. I was diagnosed with HCM a year and a half ago. Such an odd issue to suddenly have. I've always felt very healthy throughout my life and had lots of stamina until about 2 years ago. That's when I noticed I was getting dizzy if I carried something up a flight of stairs, this has steadily gotten worse to the point where I couldn't walk a full block any more without chest tightness. My doctor sent me to a cardiologist who put me on bisoprolol. I agreed to an alcohol septal ablation last year, but it was aborted when they couldn't isolate the flow to the specific muscle that needed to be shrunk. I was then referred to another HCM specialist for surgery.
They say timing is everything, and lucky for me Health Canada just recently approved the use of Camzyos and I was accepted into the trial. I started taking Camzyos 2 weeks ago and I've already noticed an improvement in my ability to walk further (I managed a full shopping trip through Costco without needing to stop to catch my breath). I had no idea I'd be so thrilled achieving something that I didn't use to think twice about.
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Hello @hansj
Welcome to Connect. I read your post and thought how similar your symptoms were to mine. It just seemed to creep up suddenly, but when I thought about it, I realized I had been slowly getting worse over time. How excited you must be that you were approved to use Camzyos and you already feel so much better. Having HCM and knowing how it feels to have to 'catch your breath' and even easy walking causes chest tightness is not fun. And thank goodness you didn't go through with the alcohol ablation! You are correct saying timing is everything! I see you are from Canada. There are several folks here from Canada also starting this new drug. From reading their stories it sounds promising. You say you started the Camzyos two weeks ago after being accepted into the trial and are thrilled with what it's done for you. It's good you were accepted and you shared your experience here on Connect with others. It lets you know you are not alone and there are others going through your same journey. Will they use an echo to look for improvement in the pressure measurement? Has your cardiologist told you how long you will be in the trial?