Connect
← Return to Myqorzo: has anyone tried this new alternative to Camzyos?
Discussion
Myqorzo: has anyone tried this new alternative to Camzyos?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Apr 7 7:31am | Replies (30)Comment receiving replies
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?
Replies to "HI @priscillaj, welcome to Mayo Clinic Connect. You came to the right place to learn from..."
Connect
@karukgirl Hi! I had my cardiac MRI yesterday and read the report this morning on my patient portal. My cardiologist appt is in 2 months. I am on Cardia XT. I am wondering if these meds help with SOBOE only. If meds don't help with the food in the stomach issue, blood being transferred to digestion from the heart, and trying to perform physical activity 1-2 hours after a meal and the temps getting warm, then meds are just not going to work for me. I was out just now, did a little bit of light work, got too warm and TRUDGED back into the house feeling very weak. I check my BP and it was 106/63. Pulse was depressed also. I know pulse ox's for fingers are NOT reliable. They tell me that all the time. But, they do tell me something, as in not getting an electrical stimilus?? Or not getting much pulse?? Weird. And I have a pacemaker, compliments of the last cardiology group who tossed a coin on how to treat me. lol. I am at St. Luke's in Kansas city MO and they are very high performing in cardiac procedures and an excellent hospital group. But this food issue and blood transferred from heart to digestion is my question now. DOES A SEPTAL MYECTOMY FIX THAT? Do meds fix that, or only the SOB? Or possibly my mitral valve needs replaced, which has moderate regurg. MRI said my left and right ventricle are small. Numbers fall below the normal range for a female. I never had any problems jogging, biking etc. First time I ever heard that about my heart. Another 'weird'. Can I request the surgery or have to go through the med route first? I am 72, 73 in August. There isn't time in my life to monkey around while another 2 years pass by...imo! There is a garden out my front door.