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.

pbo2016 | @pbo2016 | Oct 26, 2016

So glad to find this group. I was diagnosed with HOCM in 2011 while hospitalized for acute appendicitis. I had a murmur and irregular EKG for years but no one picked up on the symptoms until I exhibited heart symptoms while hospitalized with a perforated appendix. I am now on Norpace and being followed at Mayo Clinic in Jacksonville, Florida.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 26, 2016
In reply to @lamborama "Hi, Dave here. I am 56 and was diagnosed with HCM last year while dealing with..." + (show)
@lamborama

Hi, Dave here. I am 56 and was diagnosed with HCM last year while dealing with A-Fib. Looking back now my doctors think my A-Fib (last year), High Blood Pressure (diagnosed 6 years ago), and mitral valve regurgitation (8 years ago) are all from the HCM. I was cardioverted last year to get back in rhythm but have continued with severe fatigue and pressure when doing activities. At my annual A-Fib check they did more testing (Echo, Stress, and MRI) and said my HCM has increased to being obstructive. I am scheduled next week (10/31) for pre-op and then a septal myectomy on 11/1. I am looking forward to feeling better (not relishing the thought of surgery) but this site has helped me to hear the results many of you have received. Thanks for the encouragement and the updates! I plan to do my part as well going forward to help others facing this prospect. Dr. Schaff is my surgeon and I am very pleased with what I have read and heard from all of you regarding the good care at Mayo. Thanks, Dave.

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Welcome to Connect, Dave.
November 1 is just around the corner. You're in good hands with Dr. Schaff. We're happy to accompany you on the myectomy journey. You'll get tonnes of support from this group. Might I suggest you start a new discussion specifically about going for surgery soon. That way you can ask your questions, get answers and support AND the discussion thread will be there to help future new members when they prepare for surgery and post surgery.

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”

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 26, 2016

Welcome @pbo2016. Good to have someone from Mayo, Jacksonville here to share how things work down there too.

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Mummy12 | @mummy12 | Oct 26, 2016

Hi, I have been diagnosed with Hypertrophic Cardiomyopathy and recently visited the Mayo Clinic in Rochester. I saw Dr. Ommen and his staff. I was very pleased with my visit and the recommendations they made. I may have a septal ablation in the future and would like to know if anybody had this procedure and their experience and outcome.

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1 reply
vivian88 | @vivian88 | Oct 27, 2016

Hi, my name is Vivian and I am from Taipei, Taiwan. I had my apical myectomy at Mayo in Rochester in Sep. 2015. I have been doing well since surgery and am now back to normal life. So grateful to Mayo Clinic! I had midventricular obstruction and an apical aneurysm.... history of Afib and VT.... episodes of TIA..... I underwent a catheter ablation procedure in Taiwan to control my arrhythmias before I ventured out to Mayo last year. I do not have an ICD or pacemaker implanted. I hope to interact more with the rest of you and hope to be a source of help to other HCM patients.

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4 replies
mistymopps3 | @mistymopps3 | Oct 27, 2016
In reply to @vivian88 "Hi, my name is Vivian and I am from Taipei, Taiwan. I had my apical myectomy..." + (show)
@vivian88

Hi, my name is Vivian and I am from Taipei, Taiwan. I had my apical myectomy at Mayo in Rochester in Sep. 2015. I have been doing well since surgery and am now back to normal life. So grateful to Mayo Clinic! I had midventricular obstruction and an apical aneurysm.... history of Afib and VT.... episodes of TIA..... I underwent a catheter ablation procedure in Taiwan to control my arrhythmias before I ventured out to Mayo last year. I do not have an ICD or pacemaker implanted. I hope to interact more with the rest of you and hope to be a source of help to other HCM patients.

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I've got apical cardiomyopathy so look forward to hearing what you have to say as I understand apical is quite rare. I'm going to tune in to the Mayo webinar on 2nd November

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Moderator
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)
@vivian88

Hi, my name is Vivian and I am from Taipei, Taiwan. I had my apical myectomy at Mayo in Rochester in Sep. 2015. I have been doing well since surgery and am now back to normal life. So grateful to Mayo Clinic! I had midventricular obstruction and an apical aneurysm.... history of Afib and VT.... episodes of TIA..... I underwent a catheter ablation procedure in Taiwan to control my arrhythmias before I ventured out to Mayo last year. I do not have an ICD or pacemaker implanted. I hope to interact more with the rest of you and hope to be a source of help to other HCM patients.

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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?

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wandikarnadi | @wandikarnadi | 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)
@colleenyoung

Hi Connect HCM-ers
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @predictable @li @margie11 @fishinglady @uptodate68 @wandikarnadi @lisa7 @Komalin
@quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford

I'm tagging you on this message to invite you to follow the new Hypertrophic Cardiomyopathy (HCM) group on Connect. Please drop a note to say hi and introduce yourself.

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<br><br><br><br><br><br><br>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.<br>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. <br>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.<br>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. <br><br><br>Best Regards,<br>Wandy Karnady<br><br><br><br>

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Moderator
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)
@mummy12

Hi, I have been diagnosed with Hypertrophic Cardiomyopathy and recently visited the Mayo Clinic in Rochester. I saw Dr. Ommen and his staff. I was very pleased with my visit and the recommendations they made. I may have a septal ablation in the future and would like to know if anybody had this procedure and their experience and outcome.

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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”

REPLY
Moderator
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.

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