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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 5 minutes ago | Replies (891)Comment receiving replies
First time posting, but have been following the forum since my HOCM diagnosis a year ago. I have probably had symptoms throughout much of adulthood now that I look back. But out of nowhere I started having shortness of breath that kept me from doing things such as dancing, hiking or even walking. 6 months later it was confirmed. Doctor prescribed Verapamil, which seemed to work well enough that I started light exercise again. A few weeks later I left the Y and ended up in ICU with Cardiogenic shock/myocardial infarction. Since that time, I have meds changed, dosage increased and each time I feel like myself for up to 6 weeks, then right back to the same cycle. At my last appointment, my doctor, who is Camzyos certified, said that my next visit we would discuss Camzyos and/or surgery. This dosage of Metoprolol I was on lasted for about 6 weeks. Again, shortness of breath and can't take short walks. I am very open to surgery, but probably want to try Camzyos first. Trying to gather the facts.
Replies to "First time posting, but have been following the forum since my HOCM diagnosis a year ago...."
Welcome @mrsblueskies, and I am glad you made your first post!
I was a stalker on Connect too before I posted. I read every post I could about this HCM/HOCM stuff, and read everything online I could google!
Your journey sounds like so many others, including mine! It is so interesting that we all seem to have some things in common.
I like that you are trying to get as much information as you can before you decide with your doctor the best course for you. It sounds like you are active and healthy otherwise, which will be to your advantage with open heart surgery or Camzyos.
I was on multiple meds before I knew what I had. My cardiologist had misdiagnosed me with four or five different conditions and it took going to two different COEs (Center of Excellence) before the true culprit was determined. I had a murmur most of my adult life. And like you, looking back I can recall issues that may have been HCM but never addressed. It was as if we just "walked it off" like when we were kids.
When your HOCM begins to take away the things you love to do, like hiking, walking and dancing...you are faced with decisions. Only you know what is right for you and going forward you will be armed with information and ready to take this on!
I had open heart surgery. Camzyos was not an option due to clinical trials. Minimally invasive myectomy also was not an option due to location of my HOCM. So I faced the surgery with fear and trepidation, but have strong faith that brought me through. And the Mayo Clinic!
All I knew was I did not want to live like I was. I could barely do anything I loved without gasping for air, wild heart racing, debilitating fatigue...and all the other symptoms of HOCM.
I have never regretted having surgery. It gave me my life back and I no longer need any medications except one 81 mg aspirin a day.
Have you had a chance to read the Camzyos group posts? When do you see your doctor next?
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Looking back, I too, feel this has been working on me a long time. Have had SOB, chest heaviness that extends into my back, and fatigue for a really long time. But has gotten much worse over the last year.