1. < Hypertrophic Cardiomyopathy (HCM)
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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.

Profile picture for mbcube
mbcube | @mbcube | Feb 7, 2017

@rushtonrocks - I think I had a 8 days from leaving LA to MN, 2 days of testing, Surgery the next day, spent 4 days there. Discharged on day 5, and stayed local for 2 days. On day 8 I checked out of hotel, had time to kill so took a taxi to the movies, then caught the shuttle to airport home. I know some who had complications pop up and some airlines used to wave the change fee if it was medically related, but that was 10 years ago and things have changed 🙁

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3 replies
Profile picture for Ron Petrovich
Ron Petrovich | @ronaldpetrovich | Feb 7, 2017
In reply to @rushtonrocks "I am new to this site. I have a myectomy scheduled for March 6th and am..." + (show)
Profile picture for rushtonrocks @rushtonrocks

I am new to this site. I have a myectomy scheduled for March 6th and am coming from Billings, MT. My main concern is the recovery time before I can fly home. I know that I have to remain flexible which is hard for a planner like me. I am taking off of work starting February 28th to fly to Rochester for consults before surgery.

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Hi @rushtonrocks

I cannot advise you on your particular case and recommend that you ask your surgeon about that. In my experience, I had a septal myetcomy and double bypass on a Tuesday and was released from the hospital on a Saturday. This was in December of 2015 and today, I feel great. The following week at home was tough and thankfully my wife helped me through it.

I currently work in Rochester in the Public Affairs department at Mayo and if you would ever like to talk about my situation and recovery and if our schedules could work, I'd be glad to say hello to you in person while you are visiting. My experience was very positive, but there were some challenges. If you want to connect, just send me a message with your contact information and I'll follow up. Thanks Ron

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Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 7, 2017
In reply to @rushtonrocks "I am new to this site. I have a myectomy scheduled for March 6th and am..." + (show)
Profile picture for rushtonrocks @rushtonrocks

I am new to this site. I have a myectomy scheduled for March 6th and am coming from Billings, MT. My main concern is the recovery time before I can fly home. I know that I have to remain flexible which is hard for a planner like me. I am taking off of work starting February 28th to fly to Rochester for consults before surgery.

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Welcome @rushtonrocks!
Some of questions have been answered in these discussions. Check them out.
- What is the recovery like following septal myectomy? http://mayocl.in/2fdCxHz
- Septum myectomy scheduled next week Jan 20th http://mayocl.in/2lmVv2k
- Just Diagnosed with HCM http://mayocl.in/2kPfKb8

As you get to know the other members, you might have specific questions for specific members. Simply include their @username in your reply and they will get an email notification about your question. We look forward to getting to know you as you prepare for your visit to Mayo and surgery.

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rushtonrocks | @rushtonrocks | Feb 7, 2017

I am new to this site. I have a myectomy scheduled for March 6th and am coming from Billings, MT. My main concern is the recovery time before I can fly home. I know that I have to remain flexible which is hard for a planner like me. I am taking off of work starting February 28th to fly to Rochester for consults before surgery.

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5 replies
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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 3, 2017
In reply to @1949 "Hi, I'm Tillie from California. Thank you for adding me. I found out in 2011 that..." + (show)
Profile picture for 1949 @1949

Hi, I'm Tillie from California. Thank you for adding me. I found out in 2011 that my brother had HOCM. I was asymptomatic at that time and was told by a local cardiologist that I didn't have it and never would. I then became symptomatic two years ago and was lucky to find a knowledgeable HCM cardiologist. In June of this year, my cardiologist recommended that it was time for a myectomy. I am scheduled to have one on December 30 at the Rochester's Mayo.

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Hi Tillie (@1949),
How are you doing? How did your surgery go?

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vivian88 | @vivian88 | Nov 9, 2016
In reply to @eelnaloblob18 "Hi, I'm Janet, and I was diagnosed with HCM almost 20 years ago after my 18..." + (show)
Profile picture for eelnaloblob18 @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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@eelnaloblob18, depending on where your thickened muscle is (i.e. septal, mid-ventricle, apical), the myectomy you need might require different techniques. For instance, I have apical HCM with mid-ventricular obstruction and apical aneurysm. The procedure I underwent was Apical Myectomy, which took a trans-apical approach. This trans-apical myectomy is different from the traditional septal myectomy. Your doctors should determine what kind of myectomy you need. I believe a few COEs can all do septal myectomy quite well. But if ultimately what you need is an Apical Myectomy, you have to go to Mayo Clinic in Rochester. The technique for this procedure was invented by Dr. Hartzell Schaff at Mayo Clinic. I do not believe other centers can do trans-apical myectomy as well as Mayo Clinc can. Something for you to consider. Hope everything works out well for you.

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1 reply
Profile picture for Deanna Constans
Deanna Constans | @deannaconstans | Nov 9, 2016
In reply to @eelnaloblob18 "Hi, I'm Janet, and I was diagnosed with HCM almost 20 years ago after my 18..." + (show)
Profile picture for eelnaloblob18 @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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Hello @eelnaloblob18 , I work with the heart practice for all three Mayo sites. Did you get all the information you need? If not, I will follow up with our cardiac surgeons. Thank you for your insightful questions. It is good that you are being proactive in doing research about outcomes.

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mistymopps3 | @mistymopps3 | Nov 8, 2016

Hi, I just want to say how much I appreciated the webinar on apical cardiomyopathy. I am in UK so am not able to access the facilities you have in the US but still very much appreciate being able to "listen in" on the webinars you have.
Knowledge reduces fear. Thank you

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Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 7, 2016
In reply to @eelnaloblob18 "Hi, I'm Janet, and I was diagnosed with HCM almost 20 years ago after my 18..." + (show)
Profile picture for eelnaloblob18 @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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I'm glad to hear you got a reply. Yes, the largest number of myectomies are done in Rochester. You can read more testimonials from Mayo patients in this discussion, and how the travel was not the barrier to excellent care http://mayocl.in/2ef1nMc

You may appreciate seeing these 2 webinars with HCM experts from Mayo Clinic
- Steve R. Ommen, M.D., and Hartzell V. Schaff, M.D., talk about Hypertrophic Cardiomyopathy and the Surgical Treatment Apical Myectomy http://mayocl.in/2dmWhdI
- Dr. Dearani Dr. Joseph Dearani, cardiac surgeon talks about pediatric congenital heart disorders http://mayocl.in/2dLzuK9

Hope this helps.

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Margie11 | @margie11 | Nov 7, 2016
In reply to @margie11 "Hi, I'm interested in joining this community because my father had a triple bypass with a..." + (show)
Profile picture for Margie11 @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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Thanks mbcube, we're grateful he's doing well. I look forward to your advice on HCM, with your experience it sounds like you're going to be a good resource here!

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