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rhondaphones (@rhondaphones)

I'm scared

Hypertrophic Cardiomyopathy (HCM) | Last Active: Aug 10, 2023 | Replies (10)

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It is scary! So don’t beat yourself up for what you feel.

I was misdiagnosed for decades. For decades I was afraid I was going to drop dead if I exercised because my heart rate would go through the roof and I would get out of breath so quickly. Consequently, I became overweight, and out of shape because I needed to exercise. Doctors told me exercise, you won’t drop dead. I was put on a calcium blocker which was supposed to help me. It didn’t. Tests showed my heart wall was thickening. The doctors attributed it to high blood pressure, which I didn’t have.

Last year, I was finally diagnosed with HOCM. I was told about Camzyos and open heart surgery. I was scared! I am still scared! But, I want to live! So, with the encouragement and feedback of this group, and my specialist cardologist recommendation, I decided to try Camzyos. I have been on it for 9 weeks. It is not working as well for me as some of the other people in this group who are having excellent results. It’s been frustrating. But, I am doing what I have to do to live a better quality of life. I believe you can do it too! We are here to support you.

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Replies to "It is scary! So don’t beat yourself up for what you feel. I was misdiagnosed for..."

Thank you so much for your response! We are so strong! I had the opportunity for gastric bypass but lost to much weight for insurance to pay. That was another other scary thought also. I should have done it instead of listening to everyone else's opinion but I didn't so gotta move with the best. Good luck with everything!