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rhondaphones (@rhondaphones)

I'm scared

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

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I completely understand, I’ve had a murmur and issues with getting short of breath pretty much all of my life, everyone constantly brushed it under the rug, when I was young I was told I would outgrow it and then as an adult several cardiologists just kind of blew me off and then one day my pcp got frustrated and demanded an echo and then walked to the floor of the hospital I was working at and told me what I had, she said she didn’t know much about it and referred me to a new cardiologist that had new recommendations every time I saw him until finally I went to someone new that I researched, after that he did an echo and realized the extent of the issues. I kept acting like it wasn’t that big of a deal until recently when my heart started beating out of whack and I got scared. I went to my cardiologist and he sent me to a new dr that is 6hrs away, I’m at the beginning of my actual treatment journey for hocm, I am very much like you said, I knew it was there, but when I went to this new dr he explained the extent of how bad it is and I became horrified. I am currently on week 5 of camzyos, I had my first echo and there was a slight improvement so that was hopeful, but my dr told me that I am going to need surgery, I am scared about it, but I listen to the encouragement and others stories about how their experience with surgery has gone and it makes me feel hopeful! I’m in this boat with you, I’m 45 and I look at my family and get so upset with how I’ve handled things, but we have got this! I feel like the absolute most important thing is to have a team behind you that are knowledgeable about hocm and that you trust, it isn’t a very well known issue so you wanna make sure that you get a team together that you have faith in. If you ever need anything just say the word, we are all in this boat together in various stages of our journey, it is scary, but it is doable.

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Replies to "I completely understand, I’ve had a murmur and issues with getting short of breath pretty much..."

Thank you. Brought tears to my eyes. I'm so guilty for mistreating my body. I was a closet smoker off and on too. But we can't beat ourselves up. What's done is done and now we just have to do better and move forward. Prayers for you and your family. I'm glad to hear the positive results of Camyzos. I am started to feel relived about it.