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HCM getting worse?

Hypertrophic Cardiomyopathy (HCM) | Last Active: 10 hours ago | Replies (24)

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@mpjg Thank you for words, they are encouraging, I am sure my card team here in Louisville do not have experience with this, so I am scheduled in Cleveland in March, even if I feel better by then on Camzyos I am going for the whole workup there. I just found out I also have "severe left atrial dilation". One cardiologist didn't say a word about it, no one mentioned it until I brought it up to the NP at the Heart Failure Clinic, and she said, oh yeah, that's a completely different condition and it's very serious, and your cardiologist should have taken care of that, another one told me, yeah that's cause by the HOCM with SAM and it should have been addressed as well..... ugh, I feel like I am having to do everything myself for them. They don't have the experience here. I just want to start feeling better and stop being told I am at high risk for sudden cardiac death due to the gradient of 214... Im sure time will make things better but today I feel defeated.

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Replies to "@mpjg Thank you for words, they are encouraging, I am sure my card team here in..."

@cash298 I found that sometimes you do have to take the lead. I've mentioned elsewhere that the local cardiologist that read my echo (which clearly screamed obstructive hypertrophic cardiomyopathy) in Sept 2023 only recommended another echo in a year despite many moderate to severe findings. Luckily I was concerned and made an appointment with a cardiologist @ Penn Med although I had to wait several months. She took one look at the findings and immediately suspected HCM and referred me to their HCM specialist. Penn Med is a COE and after additional testing, I was started on Camzyos in Aug 2024. Before I was started on Camzyos, the staff discussed different payment pathways and they did all the work. I have had to pay very little for the medication. Take it easy (emotional stress affects my heart), seek the best care, and advocate for yourself.