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?

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 Jason,
I am an 81f with ApHcm. I was not diagnosed until I was 78 at which time I was not taking any meds except levothyroxine for hypothyroidism. Was quite a shock for me so I understand how you were feeling. I was able to get an appointment at the HCM clinic at Mayo, Rochester. Have a wonderful cardiologist there. I also have a small aneurysm on the apex of left ventricle. My genetic test also showed a variant of unknown concern. You asked about aneurysm risk. That is why you have an ICD. My cardiologist says I am entitled to one but at Mayo they have found the risk of inserting one outweighs the benefit for those in their 70s and 80s. So, I opted to go with his advise and not receive one. I have 4 daughters. Three have been screened and my oldest daughter also has ApHcm. She was quickly given an ICD and currently is not on any meds. I was not put on any meds immediately because I had no symptoms except occasional palpatations. Then six months after diagnosis, Afib presented its ugly face. I was in persistent AF for six months before it was controlled. Long story, but several rate meds were tried to no avail. Lowered my BP quite low but didn't control rate or rhythm. Was referred to Mayo heart rhythm clinic (which took 3 months for appt.) and EP gave me options of rhythm meds or ablation. I asked his recommendation and he said he would start with meds so am now taking Dofetilde (Tikosyn) and it has done a good job. However I started having breakthrough episodes which converted on their own after about 36 hours and I am now taking Jardiance in an attempt to lower my filling pressures and potentially help with the breakthrough episodes. The only other symptoms I have had are moderate lightheadedness and occasional fatigue. Of course, the fatigue could be due to age. As I said, I am 81. I am active and walk 2 to 3 miles every morning. I also do exercises about 3 days a week. My daughter who has ApHcm works full time, excercises and lives a normal life. Live your life and be thankful you have good health care. Do get your kids screened with an ECG and an Echo. That is very important. My cardiologist said my kids should be screened every 3 to 5 years. Wishing you the best in this journey.