HCM-ers: Introduce yourself or just say hi

I have not asked him how many patients he treats for this specific condition. I feel like he uses a “blanket” approach as he sees so many people in this area. I was referred to cardiac electrophysiologist as he felt like he had done all he could( his words). At least this doctor is listening to me. I have intermittent shortness of breath without exertion. Intermittent left lower leg swelling. Fatigue and poor sleep. The runs of vtach are not sustained so my defibrillator has not fired since placed in 2022.

Welcome to Mayo Connect @apdaye, I'm glad you found this support group. Have you had a chance to poke around on here? There is a lot of information that has been shared by people with your same issues. I'd like to introduce you to @irishpeaks. He has a lot of experience with HCM and an ICD, so I hope you will read some of his posts.
I feel your frustration when it seems like you are not being heard and lack information about your condition. Thankfully, it sounds like you are doing the best thing you can which is staying active and learning as much as you can about your condition. You need to be your own best advocate, as sometimes we can fall through the cracks in the healthcare system.
Is your cardiologist familiar with treating HCM? Have you considered a second opinion to be sure you have all the information?

New to the group! I was diagnosed with HCM 2 years ago. I had an episode that woke me up during sleep. I had ICD placed. I am on metoprolol 25mg BID and amiodarone 100mg QD . I had a sleep study( mild apnea). I do not sleep more than 2 hrs at a time! I have been fighting to be heard that my runs of Vtach ( unsustained) 30 sec or less occur mostly at night. I finally have an electrophysiologist who agrees(after second holter monitor). 23 episodes in 14 days, mostly at night. I am 65 and fighting to remain active. I walk 3 miles , 3-5 times a week. I have had meds adjusted at least 4 times. Ablation was mentioned but may not be successful due to polymorphic arrhythmia. I have had near-syncope events, last one was February of this year. I guess I’m not sure when I need an intervention.

That is wonderful to hear! I hope you stay healthy, HOCM is not much fun, but thankfully there are different ways to deal with it. Camzyos is one way! Stay healthy!

Hi, the symptoms almost disrepair.I am doing 100% better, and it is a miracle pill.

Hello @metta, and welcome to Mayo Clinic Connect. I'm glad you are here! And yes, it looks like you did sign up as @metta. I hope you have a chance to poke around here on Connect and read the stories shared here.
You mention you have HCM and an ICD, how is your health otherwise? Do you take meds for your heart? Are you an active person?

https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Hi Mark @flyman437, it looks like this is your first time posting, so welcome aboard the Hypertrophic Cardiomyopathy group. I posted a link to the Camzyos group, and you may want to take some time and read all their stories if you have not yet.
You mention you are on Camzyos for a year now...how are your HOCM symptoms? Are you doing better than before Camzyos?

Hi Colleen, Just joined the group. I'm signed in as @metta I think. I was diagnosed HCM in August of 2008, and have had an ICD since then. Looking forward to being a part of the discussion.

Hi,My name Mark one year on Camzyos

Marckat2006, please inform us of which meds your doctor prescribed. There are many people, especially the moderators, who are living with the HCM heart issues (yet, individually different), that you are and can offer plans of action that you can consider. Michigan is not so far from Minnesota, people from all over the world seek help there (I'm upstate NY). We can ALL sympathize with you during this very scary time! Your quality of life and peace of mind are important. Learn all you can about your condition!