← Return to HCM-ers: Introduce yourself or just say hi

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@karukgirl

Welcome to Mayo Connect @apdaye, I'm glad you found this support group. Have you had a chance to poke around on here? There is a lot of information that has been shared by people with your same issues. I'd like to introduce you to @irishpeaks. He has a lot of experience with HCM and an ICD, so I hope you will read some of his posts.
I feel your frustration when it seems like you are not being heard and lack information about your condition. Thankfully, it sounds like you are doing the best thing you can which is staying active and learning as much as you can about your condition. You need to be your own best advocate, as sometimes we can fall through the cracks in the healthcare system.
Is your cardiologist familiar with treating HCM? Have you considered a second opinion to be sure you have all the information?

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Replies to "Welcome to Mayo Connect @apdaye, I'm glad you found this support group. Have you had a..."

I have not asked him how many patients he treats for this specific condition. I feel like he uses a “blanket” approach as he sees so many people in this area. I was referred to cardiac electrophysiologist as he felt like he had done all he could( his words). At least this doctor is listening to me. I have intermittent shortness of breath without exertion. Intermittent left lower leg swelling. Fatigue and poor sleep. The runs of vtach are not sustained so my defibrillator has not fired since placed in 2022.