HCM-ers: Introduce yourself or just say hi

Such a thoughtful and kind reply! Thank you! Yes the Cardiac MRI was the thing that led to the definitive diagnosis: Apical hypertrophic cardiomyopathy with small (< 1 cm ) apical aneurysm. No apical thrombus seen. Maximal wall thickness is 1.4 cm along the apical septum. There is patchy mid-wall late gadolinium enhancement along the apical to mid septum and apical inferior wall. This is in a non-ischemic pattern as can be seen in HCM. Overall LGE burden is intermediate (3% of the myocardial mass). Normal left ventricular function. Calculated LVEF: 64%. Normal right ventricular function. Calculated RVEF: 69%.
Love your comment that you would "indulge in dietary indiscretion" - For me: chocolate milkshakes!!! I doubt I'll ever be a candidate for any type of surgery (it doesn't seem that apical myectomies and aneurysm resection are common and certainly not performed near me) but am so happy that so many HCMers have not only been able to have open heart surgery but have recovered well. I am happy to hear it! Thanks again for your comment - lifted my spirits...truly!

Jason, glad you found this site! Man glad you are getting seen by a COE and was able to catch this as fast as you did! We all have so much in common and you have every right to be freaked out by this!
Stay in contact not only with your cardiologist but as well with your primary care doctor! Together yall will all work at getting you back to your old self:)
Im 6 weeks into recovery from septal myectomy and just easing into spin biking this week to get me back on my mountain bike and hopefully running again:)
The attached you tube video explains so many symptoms i had before being diagnosed and years before being diagnosed i was talking to my local primary doctor and cardiologist about these symptoms, and continued to be misdiagnosed!
I live down in farmington NM so if you ever want to talk i would be happy to talk:)

Best of luck and again keep the close conversations with your HCM specialist!

Hi @jasonfromco, and welcome to Mayo Clinic Connect. I'm glad you found this online support group of fellow HCM/HOCM folks.
It doesn't surprise me that you are still in a bit of shock, especially with your active lifestyle. HCM doesn't care who it picks!
Couch potatoes, runners, bike riders, grandmas, teens, super athletes...it can happen to anyone.
It sounds like you are doing the best thing possible, which is finding out as much about this insidious condition and becoming your own best advocate.
Bonus: You are a pharmacist, you've got insider knowledge about beta blockers, calcium channel blockers, Disopyramide, Camzyos, and the host of other treatments cardiologist try to help alleviate symptoms with.
It is also good that you are getting treatment from a COE, which is such a positive thing.
So many of your fellow HCM'rs took years to correctly diagnose and finally be treated for worsening symptoms.
Having four kids you want to be around for would certainly weigh heavy on your mind now that you know what is going on with your heart.
Have you read this from the Mayo Clinic?
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Having a specialist at a COE is important, because you have additional concerns with the aneurysm you have to be mindful of.
No wonder you are still in shock!
I was a big time hiker. I didn't know I had HCM. The high elevations started getting worse for me. My legs would feel like lead, I'd be gasping for air...I knew something was wrong. Also on the occasions when I would indulge in dietary indiscretion, I would suffer for hours afterwards. Pounding heart. Tachycardia. PVCs. And walking up gentle inclines would make me have to stop to catch my breath. Those were my triggers. By the time I was finally diagnosed after being misdiagnosed, I had severe obstructed HCM, my heart was failing and I need open heart surgery. So I get the shock part!
I'm glad you found this site, and hope you get a chance to read some of the stories on here. @brumasterj is a fellow member who also was very active, and just had open heart surgery. If you get a chance read some of his posts...they will inspire you and give you more information.
Have you had a cardiac MRI yet? When do you see your cardiologist for follow up?

Hello - stumbled across this Connect group and was impressed by the very supportive comments of moderators and members. Diagnosed with HCM about 5 weeks ago and, admittedly, still in a bit of a shocked phase but feel I'm getting good care. About me: I am a previously very healthy 50M (no meds, no conditions, active runner) and started feeling very lousy went to the ED and after a run-around of tests (angiogram in Cath lab, treadmill stress, finally CMR) diagnosed with non-obstructive apical HCM with small aneurysm (< 1 cm). Discharged on Metoprolol and they were able to get approval for an ICD quickly which was implanted 2 weeks later. Genetic test showed only a "variant of uncertain concern" - nothing definitive. Still feel brain foggy and moderate lightheadedness quite often but I'm back to work. Interestingly I work as a clinical pharmacist at a hospital so quite knowledgeable about the meds but just trying to understand more about the pathophysiology of HCM and especially additional risks of an aneurysm. I am receiving care at UCHealth which HCMA lists as a COE and have as my cardiologist their HCM specialist so hoping I'm in good hands there. I have 4 kids ages 10, 12, 12 (twins!) and almost 14 so a bit freaked out for what it looks like for them going forward. Would love to chat with anyone with aHCM about symptom management, triggers, etc (for me, heat seems to be quite troublesome). Wishing all good health and strong hearts!

Ebony3
I have been diagnosed with OHMC about a month ago.
Am on Verapomil which recently seems to be helping. For this I am thankful.
I am pressing on with my life without this controlling my life. I have to listen to my body of course, but have faith that Father God will see me through it until He calls me home.
Thankful for this site.

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.