1. < Hypertrophic Cardiomyopathy (HCM)
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.

Mentor
Debra, Volunteer Mentor | @karukgirl | Mar 6 9:29am
In reply to @bwburchette "Thank you for your prompt reply! I live just outside Greensboro NC and will be having..." + (show)
@bwburchette

Thank you for your prompt reply! I live just outside Greensboro NC and will be having surgery with Dr Schaff in Rochester. My wife has been an incredible support for 38 years and she will be with me. I have been blessed with many great people to help us through this trial
I used to be an avid runner. I have had progressive symptoms of dyspnea, dizziness, and occasional chest pain- especially post-prandial and with activity. I had a fairly extensive cardiac work up ( stress test, echo, cath ) 10 years ago and nothing found. I can relate to many others who had years of evaluation before being diagnosed. Last summer I actually self-auscultated a mitral murmur which led to a stress echo and my provoked LVO gradient was 133! I had the good fortune of seeing a cardiologist in Greensboro who was Mayo trained and she pointed me in right direction. I unfortunately had bad side effects with Metoprolol -and Diltiazem hasn’t blunted my symptoms.
I have found the entries on post- myectomy care to be very informative. I told one of the cardiologists at Mayo last week that the patient forums on HCM were extremely encouraging- to know that we are not alone, and to know that others have made it through a similar trial. Thanks again for your encouragement!

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Your symptoms totally sound familiar! I was a runner/walker too. I couldn't figure out what was happening. And neither could my cardiologist! I couldn't tolerate the meds either. Once I made it Mayo, I knew I was in the right place, at last.
I am glad to hear your have an amazing wife who will be by your side. That is a blessing for certain. I had to fly across this great Country to Rochester, and part of that trip involved a two and half hour drive to the airport. It was an unpleasant thought, but when it was time to go home, the trip was not as bad as I had conjured up in my mind.
I would share several of the same things about packing as for a woman...loose pants, easy to pull on shirts, slip on shoes. And don't forget your cell phone charger if you have one! The days before your surgery are jam packed with all kinds of tests and procedures, so be prepared to get in and out of your clothes several times in one day.
Thank goodness you had a cardiologist who recognized what you had and where to send you. I am ever so grateful you found Mayo Connect. I hope you keep coming back and keep updating us. I am giving you extra bonus points for sharing Mayo Connect with the cardiologist! Very cool.

REPLY
Mentor
Debra, Volunteer Mentor | @karukgirl | Mar 10 9:47pm
In reply to @krb48 "Hi, I'm new here. I was just diagnoses last month." + (show)
@krb48

Hi, I'm new here. I was just diagnoses last month.

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@krb48, I'm so glad you found Mayo Connect. Welcome!
I hope you have had time to poke around on here...there is a lot of information you can learn from other people who share HCM/HOCM.
You mention you were just diagnosed last month, does your cardiologist have a good working knowledge of HCM/HOCM?

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