HCM-ers: Introduce yourself or just say hi
Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.
I invite you to follow the group. Simply click the follow icon on the group landing page.
I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.
Why not start by introducing yourself here?
Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
I don't blame you for being nervous and scared about learning you have HOCM.
I was too, and feared I would die on some days when my symptoms were so bad.
You are doing the right thing by being seen by an specialist for sure. This is an elusive condition and can take years to be correctly diagnosed. I was 61 when I learned what I had and 62 when I had open heart surgery. I have never regretted or looked back after having the surgery. It saved my life and gave me back the ability to do what I had lost...like hiking and walking our local trail system every day.
I'm glad your appointment is so quick, that will hopefully help you know your options and get a plan going forward. Have you made a list of questions yet, or will you do that after reading up some more?
I have s few questions in my head, but will write them down before my appt on the 10th. I'm sure I will have more after doing more reading on the disease.
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.