HCM-ers: Introduce yourself or just say hi

Hello. I was recently diagnosed with HCM this March. After almost 20 years of having increasing shortness of breath, coronary artery stents in 2008, open heart surgery in 2016. A fib 2 years ago, resulting in an ablation.

I was referred to a pulmonary doctor for shortness of breath, and after 5 years with him, finally got diagnosed with HCM.

Now going through testing and a genetic study. Hoping that I get approved for the meds. Not looking forward to any more surgery.

HCM has essentially limited my physical activities.

Hello @eaglenut97, and welcome to Mayo Clinic Connect.
Wow! You have been through a lot and had more than your share of heart issues. And now this too...but it is good to know what you've been dealing with and take it from there.
I'm glad you found this online group and shared your story, and I hope you have had a chance to read some of the many stories from others just like you.
Here is a link for more information on this unpleasant condition:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
And here's another to an organization outside of the Mayo Clinic with more information:
https://www.4hcm.org
You mention you are going through more testing, including genetic tests, has anyone else in your family been diagnosed with HCM?

Definitely shortness of breath is a very common symptom of HCM, along with many other symptoms that mimic many other heart conditions, making it difficult to diagnose, which can take many years...as in your case.
Are you otherwise healthy? Being healthy makes going through this easier.
When do you see your doctor next?

Hi Debra, Thanks for the warm welcome. I am fairly healthy, as best as I can be with limited ability for activities. I have other issues, diabetes 2, hypertension, etc. all are well controlled. I am 67, and feel as though I have been robbed of many good years. I believe that my cardiologists, I have had several, should have considered HCM. It took my pulmonary doctor after exhausting his options to have more cardiac testing specifically for HCM.

As of now, no one has been diagnosed with HCM in my family, although both parents had heart issues.

Thanks for the additional resources. I see my pulmonary doctor in June. I will see the cardiologist after genetic testing is completed. I was told this was required to get approval for the medication.

@eaglenut97 Welcome to Connect! I think HCM was not diagnosed often, today we have tools such as echos and MRI. As in your family, my paternal side was "hearts." On reflection, I will bet Dad had HCM, my son and grandson are checked with echoes regularly. I hope your genetic testing is successful, mine found the known mutations on genes were not present. My naughty gene has not been found yet. Wishing you steady progress in your journey!

Life time athlete. 3 yrs ago afib diagnosed at 24% afib. LA 51mlTHEN. Not caused by the afib. Now 60ml. Saw Soltesz. CClinic. Think he's right.Direct visualization for perfect bilateral lesion sets and LLA clamp. VERY tricky to make right hand turn to close LLA if thoracic approach when very size of LA blocks visualization. I am afraid of open heart, but there aren't other options. "Success" is fairly high, even if to only reduce cardiac burden, not achieve perfect sinus rhythm. I climbed Mulhacen in Spain less than a year ago. Symptoms only began in Feb.Now it's hard to walk up inclines on an ez trail. EF has gone from 72% to 60% in 4 mos. Sure. I look good on paper at present, but this is gonna go downhill fast, given the changes in less than a year. I feel like I am 8 mos pregnant too much. I live in an area where my cardiologist who said I could live a long, happy life in afib is not unusual. Of course, I have an apptmt with a new guy, but few DOCS seem to get the very real problem of a sloshing 60ml bucket ready to turn into thromboembolisms as my poor LV gets tired. Sooooo, anyone have an enlarged left atrium? Anyone have a successful surgery?

My name is Kim. I was diagnosed with HCM shortly after having an ablation for afib in 2024. After upping the dose of Diltiazem the afib seems to be under control. I started taking Myqorzo (5 mg) a couple of weeks ago. So far at least it does not seem to be helping with symptoms of shortness of breath and fatigue. But I remain hopeful.

I have HOCM and had alcohol septal ablation. I still have shortness of breath and fatigue. I also have cardiac amyloidosis (stiff heart syndrome) and I have a hole in the top of my heart in the septum. An attempt to plug the hole did not work because of the leads going into my heart from my ICD.
Jim

@kim48 Hello Kim! I see this is your first contribution to Connect. Welcome to the big-hearted discussion! You are trying to remain hopeful that Myqorzo will help you. I have never taken medication for HOCM but had a septal myectomy in 2022. You may find a more appropriate and helpful discussion, especially about if Myqorzo takes time to have an effect by looking at and asking in one of these two discussion threads: https://connect.mayoclinic.org/discussion/myqorzo-has-anyone-tried-this-new-alternative-to-camzyos/ and https://connect.mayoclinic.org/discussion/anyone-started-myqorzo-5-mg-experience-please/
These medications have been labeled miracles for some, unhelpful by others and for the rest of the people, they work for a while and then they do not. It seems to be unpredictable for any given person. Meanwhile please do learn all you can about HCM, that may be helpful in generating questions for your doctor. https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198. Was your Afib related to HCM? May I also suggest doing an intake with the Hypertrophic Cardiomyopathy Association 4hcm.org where they educate and help people navigate their journeys in living with HCM.

Hello everyone, I’m Chris, a 52-year old living in the Chicago area. I was just diagnosed with HCM last month after being hospitalized with Afib. I’m still in the process of researching this condition and stumbled onto this support group.