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HCM-ers: Introduce yourself or just say hi
Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.
I invite you to follow the group. Simply click the follow icon 
on the group landing page.
I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.
Why not start by introducing yourself here?
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HugInterested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
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Hello Al from Alberta @alwiedeman, and a warm welcome to Mayo Clinic Connect!
Your story sounds like so many of the HCM/HOCM folks on here...some of us tend to go for years with either the wrong diagnosis or no diagnosis.
Have you had a chance to read the Camzyos support group discussions?
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Is your cardiologist up-to-date on all things HCM and Camzyos?
There are several members on Connect from Canada, and it sounds like they have a pretty good system for those who are taking this drug.
Are you active and able to exercise even with HCM?
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1 ReactionHi Brandon @mnsportsmanjr, and welcome to Mayo Clinic Connect!
I'm glad you are here and able to share your story with others. Dr Dearani was part of my surgical team as well, and he is considered one of the best in world for septal myectomies.
You are in Minnesota, so I am assuming (which we know what that means!) that you are part of the Hypertrophic Cardiomyopathy clinic at Mayo?
What do you mean you are "right on the edge of being too far gone for Camzyos?" Has your HCM returned or is something else going on with your heart? Forty-two is a youngster, you want to take care of yourself as best you can...
As indicated I was just diagnosed with HCM in January 2025. I have not changed my exercise regimen for quite sometime and my breathing or other symptoms seem not to have changed a whole bunch. I’m golfing (walking) 9 holes every week. I’m riding my electric bike twice a week for about 60 km, (45 miles). I’m not pushing myself to the same extent I was a year or so ago, but am more than able to keep up. The electric bike is much easier than the hybrid, but I am 76. I was put in touch with a cardiologist here in Edmonton and he comes across really good. He referred me to a Bristol Myers support Group out of Eastern Canada. They will be getting me on the drug soon, I hope. All the costs are covered through Blue Cross and Sun Life. I will report further when I actually get started on Camzyos!
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1 ReactionHi!
My recent Echo results in the summary said "Hypertrophic obstructive cardiomyopathy (HOCM) is suspected"- I do not have any continuous symptoms. Occasionally feel a mild shortness of breath when lying down. I am 75 and have had open heart surgery almost 7 years ago for aortic valve replacement. Because of a "heart block" in which a node was destroyed during the surgery I also received a "dependent" Pacemaker. My Echos have been normal until now. The NP in my cardiologist's office has presecribed a Beta Blocker and I am not on any other drugs. Not ral excited about starting a Beta Blocker. So, I am looking for information on the subject. Thank you.
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2 ReactionsHello everyone,
My name is Sharon, I'm a professor of music, in my 80s, still working.
I have OHCM, have been struggling with it for four years, tried Camzyos for 1 1/2 years to no avail, and will have an alcohol ablation at Mayo/Rochester in late August.
Are there chat groups? I would love that.
Best to all! S
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1 ReactionSharon,
I also have HOCM and had alcohol septal ablation at Mayo in Rochester, MN
I struggled with breathing problems for many years and was miss diagnosed. I was told that I was an asthmatic but a sudden cardiac arrest proved otherwise.
I still am short of breath but the surgery was necessary. If Mayo recommends alcohol septal ablation, then have it done. They went through my femoral artery for the surgery. I was awake for this surgery and spent 4 days in recovery. Mayo will take care of you.
Jim
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3 ReactionsHello @sharonmann30, and a warm welcome to you!
I'm glad you found the HCM support group, and I see you already have an excellent response.
Have you had a chance to read up on HCM/HOCM?
Here is a link to a Mayo Clinic article:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-cause
I also found this from the Cleveland Clinic about the ASA (Alcohol Septal Ablation) procedure:
https://my.clevelandclinic.org/health/treatments/22498-alcohol-septal-ablation
Will you be traveling to Mayo Clinic or do you live near by?
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1 ReactionDear Jim - wonderful to meet you - thanks for your clear response. I'm committed to the alcohol ablation in late August, and in fact, have requested it be sooner. Am on a waiting list.
The plan is the same as yours - it will be done through the femoral artery and I am expecting to spend 4 days in recovery.
It does disturb to hear that you are still short of breath. No improvement whatsoever after the ablation?
Best, Sharon
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1 ReactionSharon,
I did receive much improvement after the ablation however I now also have Cardiac Ambyloidosis (Stiff heart syndrome). The outside of my heart is stiff and struggles to pump blood to my brain so I'm experiencing eschemic strokes. There is no medication or surgeries that will correct this.
FYI: I too was a Professor (criminology)
Jim
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