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.

yurkosolhan | @yurkosolhan | Mar 17, 2020

I totally agree-good call. "No wine before its time..." Be at peace with your very good decision and be ready to proceed when the situation swings back in your favor.

Debra, Volunteer Mentor | @karukgirl | Mar 17, 2020

In reply to @rrowner2 "Thank you, you will get lots of support from this group so stay in touch. Take..." + (show)

Well, just like I didn't see HOCM or Open Heart Surgery in my future, and just when I believed I had accepted the plan...COVID-19 mass hysteria manifested. Didn't see that one coming. So yesterday, literally, 8 hours before our trip to Sacramento International, we made a decision to cancel. I felt deflated like a balloon. After the US Surgeon General, Dr. Adams, was urging hospitals to cancel all non-emergent cases, and then met with the leaders in AHA and President Trump urged state Governors to urge hospitals to cancel cases, I wondered if mine would be cancelled. It was to be this Friday, March 20th. Then all the shut downs started in our State. And the talk of the chance of domestic travel restrictions from certain areas. Probably California, although we are in Northern California and not like the rest of the state. I communicated with Mayo Clinic Cardiovascular Dept. yesterday and they completely understood, so we are scheduling another surgery in the next 8 weeks or so after this virus loses power. I can't describe how stressful it's been, but I am not in control. God is. Trusting is my job. He has the rest. Thank you for all the great support, thought I'd give an update. I also have a little "cold" right now so really all the signs were there, and cancelling, though a difficult decision, seems like the right thing to do. Probably a bad idea to have open heart surgery and be traveling during a global pandemic, which looks to peak when I would be coming home, during massive shutdowns, travel advisories, and public hysteria. Looks like I get to stay on the rollercoaster longer!

rrowner2 | @rrowner2 | Mar 9, 2020

In reply to @terryviazanko "Hi I’m Terry and I live in Michigan. I’ve known I have HCOM for 9 years...." + (show)

Welcome to the group Terry

TerryViazanko | @terryviazanko | Mar 8, 2020

In reply to @cynaburst "Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one..." + (show)

@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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Hello Cynthia! Terry from Michigan ❤️

TerryViazanko | @terryviazanko | Mar 8, 2020

Hi I’m Terry and I live in Michigan. I’ve known I have HCOM for 9 years. First discovered during Ecco To prepare for blood cancer treatment. I knew there was an issue but doctors said it was anxiety. I have a small aneurysm and scarring. I have a defibrillator implanted. I tire easily! I go to U of M and Cleveland alternately. Doing ok. Just too chunky!

bbonchek | @bbonchek | Mar 5, 2020

In reply to @bbonchek "A small specialty group in Indiana Midwest Center for Joint Replacement There are many good docs..." + (show)

Ps I am from southern Indiana

bbonchek | @bbonchek | Mar 5, 2020

In reply to @riderwayne "Thank you. Where did you get yours done?" + (show)

A small specialty group in Indiana
Midwest Center for Joint Replacement
There are many good docs that work from big hospitals
I just had a septal myectomy at Cleveland Clinic
You may want to go somewhere like that
I would love to personally talk to you if you want

riderwayne | @riderwayne | Mar 5, 2020

In reply to @bbonchek "Hi Wayne I have HOCM and had a total knee replacement in august 2018. My docs..." + (show)

Thank you. Where did you get yours done?

rrowner2 | @rrowner2 | Mar 4, 2020

In reply to @karukgirl "Thank you for sharing your story. I'm happy your husband is doing so well. It's encouraging..." + (show)

Thank you, you will get lots of support from this group so stay in touch. Take care
Maureen

Debra, Volunteer Mentor | @karukgirl | Mar 4, 2020

In reply to @rrowner2 "Hi there, My husband had septal myectomy at Mayo in Rochester Dr Schaff was his surgeon...." + (show)

Thank you for sharing your story. I'm happy your husband is doing so well. It's encouraging to hear these stories and have the benefit of being able to "look back", hindsight I suppose, and help others who now face what you have already gone through. I have read about how common depression is in recovery, and glad it didn't last long. I suppose it's helpful to know all the things, good and bad, that go along with something so major. Thank you for sharing. I appreciate the information. Best regards

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