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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 19 hours ago | Replies (806)Comment receiving replies
Thank you so much for your reply. It's really helpful to hear your experience as we do have many similarities. It's amazing how much better you are. When you started taking it did they reduce your metoprolol? Did you fly at all in the first few months on Camzyos? It sounds like yours was worse than mine mine's about 50 with Valsava. I'm worried it will go down too much and my heart will stop! I'm 76 yrs old and am an author and travel to teach. I teach Buddhism and have many students around the world. I am currently scheduled to tour in UIS and Europe this year. If I start Camzyos I have to cancel my travel and teaching schedule and my students would be really disappointed. So I'm weighing the need for the medication with commitments I have made and can't figure out if I could wait til I finish my commitments (Dec) or if I should cancel. I find long flights prticularly hard and use an oxygenator. I can't drink alcohol since I started Metoprolol I didn't feel good. I can walk u stairs and hills and ride my bike.
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It sounds like you have a very full life in your current condition, so I understand that would make it hard for you to change your course of action midstream. For me, it would be about quality of life. If you feel strongly about keeping your schedule and traveling to teach, go for it! You seem to have found a way to be comfortable enough to pursue your passion. (You did mention having to use oxygen on long flights which seems limiting, but not impossible to manage) I did fly each month that I have been on Camzyos , felt great, and have never used oxygen. Camzyos will be here when you return. I do know that once you are approved to use Camzyos, it is a one year benefit and is approved for that time frame only.
You asked about my Metoprolol use. I had to increase my Metoprolol when I increased Camzyos to 10 mg. I take Metoprolol for Mitral Valve Regurgitation.
As per your concern about your heart stopping. I was assured by my cardiologist that anyone approved for Camzyos meets a certain criteria and the way I receive an ECHO every 22 days, then meet with my cardiologist helps me feel like I am being tracked very closely. I do not believe they would approve you without believing you were a great candidate for the medicine. As a matter of fact, after talking to the nurse at the Mayo Clinic's Hypertrophic Cardiomyopathy office in Scottsdale , AZ, I learned that nearly all of their patients on Camzyos are experiencing results similar to mine. That is so encouraging. (I am a patient at the U of W in Seattle) I would love to hear more about your experience in the future.