1. < Hypertrophic Cardiomyopathy (HCM)
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Moderator

HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young, Connect Director @colleenyoung, Oct 25, 2016

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 image-f6386d0357e2 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?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Profile picture for eaglenut97
eaglenut97 | @eaglenut97 | 5 days ago

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.

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Mentor
Debra, Volunteer Mentor | @karukgirl | 5 days ago
In reply to @eaglenut97 "Hello. I was recently diagnosed with HCM this March. After almost 20 years of having increasing..." + (show)
Profile picture for eaglenut97 @eaglenut97

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.

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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?

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Profile picture for eaglenut97
eaglenut97 | @eaglenut97 | 4 days ago

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.

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eaglenut97 | @eaglenut97 | 4 days ago

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.

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Mentor
Linda, Volunteer Mentor | @walkinggirl | 4 days ago
In reply to @eaglenut97 "As of now, no one has been diagnosed with HCM in my family, although both parents..." + (show)
Profile picture for eaglenut97 @eaglenut97

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.

Jump to this post

@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!

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