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 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.

Colleen Young, Connect Director | @colleenyoung | Oct 27, 2016

In reply to @roosevelt "Hi, I'm Roosevelt and hope to communicate with you about healthy nutrition for preventing diabetes and..." + (show)

Hi Roosevelt,
I invite you to also join the Diabetes Group here: http://mayocl.in/2eUNVZY I think you'll be particularly interested in the discussion called "Type 2 diabetes & questions about how to better manage diet" http://mayocl.in/2fjWVeh

roosevelt | @roosevelt | Oct 27, 2016

Hi, I'm Roosevelt and hope to communicate with you about healthy nutrition for preventing diabetes and exercise.

vivian88 | @vivian88 | Oct 27, 2016

In reply to @vivian88 "Hi, my name is Vivian and I am from Taipei, Taiwan. I had my apical myectomy..." + (show)

Hi Colleen, I stayed in Rochester for exactly 7 weeks post surgery before I travelled home to Taipei, Taiwan. The flight was 17 hours.

1949 | @1949 | Oct 27, 2016

Hi Colleen. I believe communication between local and distant HCM could be improved, including with myself. I do keep a binder of my tests and procedures.

Colleen Young, Connect Director | @colleenyoung | Oct 27, 2016

In reply to @debcrawford "I am so lucky to have the University Of Iowa Hospital and Clinics just 30 minutes..." + (show)

Welcome Deb and Tillie (@1949). Do you find the communication between your local and distant HCM providers to work well? Do you keep records of all test and procedures too?

Colleen Young, Connect Director | @colleenyoung | Oct 27, 2016

In reply to @colleenyoung "Hi Connect HCM-ers @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag..." + (show)

Hi Wandy, I'm glad you could join us! So you're from Indonesia. With the picture of Mt. Robson in your profile picture, I thought you might be Canadian. Welcome to the group.

Colleen Young, Connect Director | @colleenyoung | Oct 27, 2016

Hi all,
Next Wednesday, November 2, Mayo Clinic Connect is hosting a webinar on hypertrophic cardiomyopathy and surgical treatment with apical myectomy. Steve R. Ommen, M.D., consultant in cardiovascular diseases, and Hartzell V. Schaff, M.D., consultant in cardiac surgery, will discuss the symptoms, diagnosis and treatment options of hypertrophic cardiomyopathy including the surgical treatment of apical myectomy.

The webinar will be show right here on Connect. Post your questions here http://mayocl.in/2dmWhdI before the webinar, and we'll get them to Drs Ommen and Schaff. You can also ask questions during the webinar.

Colleen Young, Connect Director | @colleenyoung | Oct 27, 2016

In reply to @mummy12 "Hi, I have been diagnosed with Hypertrophic Cardiomyopathy and recently visited the Mayo Clinic in Rochester...." + (show)

Hi @mummy12, you are in good company here. Welcome. It would be great if you could start a new discussion about septal ablation.

Here's how to start a new discussion
1. Go to the HCM group homepage http://mayocl.in/2eJdqOc
2. Click “START A DISCUSSION”
3. Give your discussion a title (maximum of 70 characters) that briefly describes the topic and will help others find it.
4. Type your message
5. Click “CREATE DISCUSSION”

wandikarnadi | @wandikarnadi | Oct 27, 2016

Hi, I am Wandy Karnady from Jakarta, Indonesia, since October 2012, I had been diagnosed with Septal Hypertrophy Cardiomyopathy (Septal HCM), with LVOT gradien 68 mmHg.I contacted Mayo Clinic Rochester in December 2015, was very lucky been recommended by Colleen Young, the Connect Director of Mayo Clinic, to join Mayo Clinic Connect until now. Until today I have just been taking 50 mg Tenormin (Beta-Blocker) once a day, while doing 1 hour walking exercise every day. So far my condition is improving, recently LVOT gradien is around 50.Thank you so much to Colleen for inviting me to follow the new HCM group on Connect, as the information exchanged by the participant in this group been really very useful for me and all the other HCM ers. Best Regards,Wandy Karnady

Colleen Young, Connect Director | @colleenyoung | Oct 27, 2016

In reply to @vivian88 "Hi, my name is Vivian and I am from Taipei, Taiwan. I had my apical myectomy..." + (show)

Welcome to Connect, Vivian. I think it is safe to say, from the group sharing here, you have traveled the furthest to come to Mayo Clinic. How long did you stay in Rochester before being able to travel back to Taipei?