HCM-ers: Introduce yourself or just say hi

My name is Deborah and I was diagnosed with HOCM two years ago. I’ve been on Camzyos for 1 1/2 years. It definitely got rid of the obstruction but I’m still fatigued and out of breath upon exertion. I hope to hear from others how they cope with this. (I also take metoprolol and isosorbide mononitrate).

Dear Debra,

Thank you for the welcome. I live in the SF Bay Area and will be traveling to Mayo in late August for my alcohol ablation. I have been to Mayo three times in the last four years, to explore options. My condition is complex enough so that Dr Dearanyi prefers the interventionalist-approach, probably through the femoral artery. We will begin with an alcohol ablation to (hopefully) reduce the abnormal thickness. This in itself may reduce my. acute symptoms of shortness of breath. A second, more complex procedure, also with Dr Eleid, would actually replace the mitral valve. The second procedure may or may not be necessary and would be months apart. Has anyone else gone through this two-step interventionist approach? Thanks to all! Sharon

I should add that I'm 79 and very active.

I'm from Canada as well, from Winnipeg. I started taking camzyos about 6 weeks ago and I'm quite delighted and surprised that I'm noticing a difference - my gradient has gone from 80 to 30 and I'm finding I have more stamina than I've had in a very long time. Long staircases and uphill are still a challenge but I'm now optimistic that I'll be doing better at some point.
We're visiting in Vancouver right now so I'll see if there's a difference walking around the streets here from when I was last here and having to stop every half block to catch my breath.

Do check out Mayo in Jacksonville, FL, that may be feasible for you. From what I have read in these chats, several people are patients there. If a specific surgery/treatment is recommended and they cannot provide it, they will refer you to a place where you can receive it.

Melissa,
Sorry that you live so far away. I know that when I'm at Mayo I see vehicles from several states away and flights bringing patients from all over. Test can also be done locally and sent to Mayo. There are options.
Best to you!

That may not be feasible for me. I live in SC and trying to find the best place. So far all I've seen if Charleston.

Mayo Clinic in Rochester, MN is the best place to go!

Hi, I’m Melissa.
I’m 50 years old and currently undergoing evaluation for hypertrophic cardiomyopathy. My echocardiogram showed severe predominantly basal septal hypertrophy, a hyperdynamic left ventricle (>65%), and a resting LVOT gradient of 82 mmHg with Valsalva. Systolic anterior motion (SAM) of the mitral valve is present, along with multi-valvular regurgitation.

I have a longstanding history of hypertension, which is being considered as a contributing factor, but my cardiologist believes the findings are more consistent with HCM. I’m scheduled for further diagnostic testing, including a stress echocardiogram and cardiac MRI.

I’m here to connect with others, share experiences, and better understand how to manage this condition.

Hi! I'm new to this and just working on my diagnoses. I still have a cardiac MRI and stress echo to have done. My cardiologist is sure this so my diagnoses he says. Nervous about where to fo to get the best care. Really happy to find this group