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.

@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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@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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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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@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

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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@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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4 weeks of apical myectomy. Healing well, but I sure am having dome down in the dumps days. Been.off all narcotics for over 2 weeks.

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@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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I was able to function rather well on the 5th day. That's is when i was discharged. I am 4 weeks out of a Apical myectomy. Feeling very well.

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@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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Thanks Ron! I certainly am not going through what you did. Just a septal myectomy which is daunting enough for me. I am waiting on my itinerary from Mayo so I can work out my plans. I fortunately have family that will help me out when I get back to Billings with my recovery. Thanks for your positive information. Pace

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@mbcube

@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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Thanks for the info! I hope to get my airline and hotel soon for the March 6th septal myectomy. Trying to figure out how long to recover before flying back. It sounds like most folks are discharged by day 5. I am hoping if I take an extra day or two that will give me cushion to plan flight back to Billings, MT.

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