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Myqorzo: has anyone tried this new alternative to Camzyos?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Apr 7 7:31am | Replies (30)Comment receiving replies
@karukgirl Once I find out more after my cardiac MRI and have my first good talk about things with my cardiologist I hope I can make a sound decision of how to proceed. I feel like meds are just putting a bandaid on the problem and at best I will be 'hoping' for doing better at bringing groceries in from the car! I have higher goals than that since I have a garden and that takes a little bit of physical effort. Right now my thoughts are to cut right to the chase and ask about the septal myectomy surgery, which might be open heart. If I just bit the bullet (if I qualify) and get it done, then maybe 6-8 months or so, I am hopefully recovered. If there are no complications. I already have a pacemaker from the last cardiology group, who turned out to be somewhat incompetent. I think they just flipped a coin between pacemaker and mitral valve repair. I did specifically express to the dr I had shortness of breath ON exertion. First clue I'd say for this condition we all share. I think I dodged a bullet at that place. The dr came in and said 'we think a pacemaker will benefit you'. WE THINK? I am still new to all this and adjusting to it.
Replies to "@karukgirl Once I find out more after my cardiac MRI and have my first good talk..."
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HI @priscillaj, welcome to Mayo Clinic Connect. You came to the right place to learn from others with your same condition. It feels good to know you are not alone with HCM, doesn't it?
I'm sorry that you felt so unheard at your last cardiology group.
As you said, this is all new to you and you are adjusting to an unwelcome heart disease. I remember when I was first diagnosed, correctly, for the first time...after I voraciously started reading all I could get my hands on, I was terrified.
I've posted a couple of links from the Mayo Clinic regarding Hypertrophic Cardiomyopathy. If you haven't had a chance yet to learn about this elusive condition, these are very informative.
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
https://mcpress.mayoclinic.org/healthy-heart/medication-and-surgery-treatment-options-for-hypertrophic-cardiomyopathy/
It sounds like you are not yet sure where in the HCM process you are, but you will know more after the cardiac MRI.
I highly suggest you learn as much as you can about what you have inside your heart. That helps you be informed about your condition and helps you and your doctor to decide on the best course of action.
I would not hesitate to suggest seeking out a Center of Excellence (COE), such as the Mayo Clinic, for a second or third opinion.
If you feel your cardiologist is well educated in the treatment of HCM or if your HCM is obstructive, that's a good thing.
I was diagnosed with a rare heart condition and recommended for open heart surgery in my local town. I am ever so grateful I asked for two more outside opinions at COEs, because I would have had open heart surgery for something I did not have!
You sound like you have an open mind and are willing to explore options, including open heart surgery, to help you live your best life.
For me, I did not want to be on meds for the rest of my life, and just wanted to get it over with. Others, and rightly so, fear open heart surgery. I sure did! In my case, by the time I got the the Mayo Clinic, my heart was failing, and my HOCM was severe.
I never look back and wish I had not done it. It gave me back my life.
It's officially Spring, and garden season is open...I bet you can't wait to get your hands in the dirt. Having HCM can make the smallest chore feel like climbing a mountain, carrying 100 lb weights on both legs and your heart feels like it's in the fast lane doing 125.
You mention having an MRI, is it coming up soon?