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?

@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

@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?

@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?

@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.

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?

@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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@mistymopps3 from what I understand, apical variant happens more in East Asians. I am Chinese. Within the Asian population, about 20-25% of all HCMers have the apical variant. Whereas in the US and Europe, only 1-2% of HCMers are apical. I am HOCM with mid ventricular obstruction and an apical aneurysm. This is probably the worst kind of HCM one can have.

@Sensation

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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It’s been corrected 🙂

ty Colleen ^_^

Hi Dave,

Wishing you the best. Hope your surgery improves your life alot. It sure did for me. And you are in great hands.

Dave I hope your surgery went well, and that you get a lot of rest afterwards and get well soon! *hugs*

Thanks to everyone who contributed great questions to today’s webinar about HCM with Drs Schaff and Ommen. For anyone who missed it, you can watch it anytime here: http://mayocl.in/2rcdkDO

Hi @dtwgwen @rwhite1919 @stacysco @phileigner @onewholovesrock @jeffjonestn @77dhowell @lazell123 @meprahs4554 @janicepike @cstinecipher and @bluewillowskys great to meet you on the webinar. We invite you to introduce yourself to the group and take part in the discussions here in the HCM group on Connect. Ask questions, offer your experience and knowledge and tell us your story.

Hi, I’m interested in joining this community because my father had a triple bypass with a septal myectomy 5 years ago at the age of 78. His 9 and a half hour surgery was performed at Columbia Presbyterian, where he had an 8 day stay. A year later he underwent an Abdominal Aortic Anyurism Repair, also at Columbia, for a AAA that was discovered a few years prior to his HCM surgery (it had grown to a dangerous size). He’s now 83 and in very good health, doing all things he did even 20 years ago. He’s always been very active, all his life, follows the Mediterranean diet (he’s from Italy). He does have a sweet tooth but never over indulges, just a little bit is fine, and he scrapes the frosting off of birthday cakes “It’s too much” (the doctors got a chuckle when they heard that). Unfortunately his brother and a few other male relatives who were also active and in good shape passed away from heart disease, and we often wonder if perhaps they also had HCM. It’s so important to get treatment from doctors and hospitals who have great experience with HCM, like those from Mayo Clinic, etc even if you have to travel. If you can’t travel, then maybe you can ask your doctor to confer with a doctor from a major hospital? I wish everyone here the best of health and success in their HCM journey.

@margie11

Hi, I’m interested in joining this community because my father had a triple bypass with a septal myectomy 5 years ago at the age of 78. His 9 and a half hour surgery was performed at Columbia Presbyterian, where he had an 8 day stay. A year later he underwent an Abdominal Aortic Anyurism Repair, also at Columbia, for a AAA that was discovered a few years prior to his HCM surgery (it had grown to a dangerous size). He’s now 83 and in very good health, doing all things he did even 20 years ago. He’s always been very active, all his life, follows the Mediterranean diet (he’s from Italy). He does have a sweet tooth but never over indulges, just a little bit is fine, and he scrapes the frosting off of birthday cakes “It’s too much” (the doctors got a chuckle when they heard that). Unfortunately his brother and a few other male relatives who were also active and in good shape passed away from heart disease, and we often wonder if perhaps they also had HCM. It’s so important to get treatment from doctors and hospitals who have great experience with HCM, like those from Mayo Clinic, etc even if you have to travel. If you can’t travel, then maybe you can ask your doctor to confer with a doctor from a major hospital? I wish everyone here the best of health and success in their HCM journey.

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Hey Margie, thanks for telling the group a bit more about you. Your story about your father and other male relatives reminds me of @cynaburst‘s story that she shared about her father and uncles in this webinar with Dr. Dearani. You and the others in the group might be interested in watching it.

Physicians, Patients & Rare Diseases on Social Media http://mayocl.in/2fhxwyC
Presented by Dr. Joseph Dearani, Chair of the Division of Cardiovascular Surgery at Mayo Clinic and Cynthia Burstein Waldman, Patient

Hi, I’m Janet, and I was diagnosed with HCM almost 20 years ago after my 18 year old son was diagnosed with it. My mom died young from it and so did her grandfather. I have very little information about my dad’s side, but he did have a triple bypass in his 60s. It seems I may have to have a myectomy. My question is this: do they perform myectomies at the Florida Mayo Clinic (I live in Florida), or will I have to go to Minnesota? I have called the Florida clinic and e-mailed them, but haven’t received a response or appointment from them yet. But they did e-mail me that Mayo charges 15% above my Medicare which is with BCBS. I’ve heard that Cleveland Clinic also does HOCM myectomies, but they don’t accept my insurance as in-network either. I’m still waiting for a response from them as well. Are Mayo and Cleveland clinics rated equally high for these myectomies?

@eelnaloblob18

Hi, I’m Janet, and I was diagnosed with HCM almost 20 years ago after my 18 year old son was diagnosed with it. My mom died young from it and so did her grandfather. I have very little information about my dad’s side, but he did have a triple bypass in his 60s. It seems I may have to have a myectomy. My question is this: do they perform myectomies at the Florida Mayo Clinic (I live in Florida), or will I have to go to Minnesota? I have called the Florida clinic and e-mailed them, but haven’t received a response or appointment from them yet. But they did e-mail me that Mayo charges 15% above my Medicare which is with BCBS. I’ve heard that Cleveland Clinic also does HOCM myectomies, but they don’t accept my insurance as in-network either. I’m still waiting for a response from them as well. Are Mayo and Cleveland clinics rated equally high for these myectomies?

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Both are rated equally high. I know that Surgeons from Mayo would travel to the Mayo in AZ for surgeries, but not sure if they do that for Florida. I think part of the issues is the support staff at these facilities.

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