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 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.

@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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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.

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@debcrawford

I am so lucky to have the University Of Iowa Hospital and Clinics just 30 minutes away from me. I have had a wonderful cardiologist and now a genetic cardiologist who has taken over my care.

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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?

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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.

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

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

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@roosevelt

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

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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

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@colleenyoung I posted a few questions on the webinar, I'm wondering if there's a way to delete one of the questions I posted to add something to the question or a way to edit my question?

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@Sensation

@colleenyoung I posted a few questions on the webinar, I'm wondering if there's a way to delete one of the questions I posted to add something to the question or a way to edit my question?

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I can delete it, so you can resubmit. Which one?

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@cynaburst

Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one of the mentors here and got involved with Mayo Clinic and its HCM program when I traveled to Mayo over ten years ago now to have a myectomy. I was so impressed with the treatment I got at Mayo, and became so convinced of the importance of being treated at a specialty center, that since then I have worked to spread the word about how to live well with HCM. The most critical thing is, whether you need surgery, or medical treatment, or anything else related to HCM, having a team that is knowledgeable about HCM is so important.

As far as my HCM story, I have a long family history with HCM. I lost my grandfather, uncle and father to the disease. I have had an ICD for 14 years, and had a myectomy 10.5 years ago. I had my son knowing I had the disease and my father lived most of his life with the disease, so I have pretty much lived through or witnessed just about every stage of HCM. All of these experiences led me to create two blogs about my experiences with HCM and to help educate patients about it.

The first blog: http://www.cynthiassummeradventure.blogspot.com is about my myectomy experience at Mayo Clinic. At the time it served as a updating tool for my friends and family, but since then it has helped lots of folks learn what to expect as they prepare for myectomy.

I recently created http://www.HCMBeat.com which is a collection of resources about HCM as well as news of interest about the disease, new treatments, people living with the disease, etc.

Anyway, that is about it for me right now. Please join the conversation and tell us about you and your HCM story. We would love to hear about you and your own experiences. One thing that I have really learned while navigating HCM myself is that it makes such a difference to have others who have been there before to guide you along the way and help you feel less alone. Through my interactions with other patients, I had the strength to seek my myectomy surgery, I have learned about the disease and how to live best with it, and many other common sense tips that have made a huge difference in how I successfully live my life today.

I hope that this community will do the same for someone else so the word will continue to spread.

Welcome all, and I hope to hear more from you.

Cynthia

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Dear Cynthia, thank you so much for your invalueable contribution about how to live with HCM, I always follow and read your sharing experience and knowledge about it.

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It's this one: Who is eligible for an Apical Myectomy out of HCM Patients? I meant to put Who is eligible for an Apical Myectomy out of Apical HCM Patients?

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