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Just Diagnosed with HCOM

Hypertrophic Cardiomyopathy (HCM) | Last Active: Feb 2 7:10pm | Replies (71)

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@hougoss
I see the mentor has already reached out to you with great feedback and information.

I have heart failure caused by cardiomyopathy. I see a heart failure specialist. In fact my HF doctor is the Director of heart failure and transplant division at Mayo Jacksonville.

A lot of cardiologist are experienced and knowledgeable on cardiomyopathy and hopefully you have one. If not seek out a heart failure specialist and like mentor mentioned second opinions if any doubt at all.

You did not mention your ejection fraction. Is us normal (50-70)? Mine went down to 25-30 until put on entresto and carviidol and has remain same since then. I was seeing a regular cardiologist at my home town for my cardiomyopathy. I wanted a second opinion and that is when I went to Mayo Clinic and saw HF doctor and electrophysiologist. My HF doctor changed my medications immediately.

Now some inspiration here. I was diagnosed with cardiomyopathy and heart failure in 2001. It is now 2025. I do sprint triathlons and exercise 6 days a week. When I went to Mayo for second opinion and then decided to stay with them I got excellent medical care. My EF had remained the same for 10 years now. When I do stress test at Mayo they come back low risk of cardio risk.

So stay positive. There are great medication and lifestyle changes to treat this, stay positive.

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Replies to "@hougoss I see the mentor has already reached out to you with great feedback and information...."

Thank you.

Sent from Yahoo Mail for iPad

What medications are you currently on?

Still trying to understand but my EF says 63%
Mild SAM with 6.56 mmHG / 15.8mmHG max gradient at rest/ valsalva.

I am a retired nurse since 2018. I am Amazed at the medical and surgical advances over the course of my career. So many people like yourself living with heart conditions who remain very active. It makes me very optimistic that the upcoming myectomy and surgery on my MV at Johns Hopkins will help
decrease my symptoms of SOB, dizziness, palpitations. Feeling inspired by your personal story. Thanks so much!