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?

@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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@janicepike

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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Hi there @janicepike, congrats on a successful surgery and for getting past the narcotics! You’ve body has been through a major event and is going to need time to get back up to it’s usual paces, mentally and physically. I saw my father go through the same thing you’re going through and saw that he was out of sorts also for awhile, but he improved quickly once he got back to his usual routine. Maybe taking up a new hobby would help take your mind off things. Go easy on yourself, you deserve it!

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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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@rushtonrocks do you know about the Mayo Clinic Concierge Services? They can assist you with questions related to lodging, transportation, local businesses and attractions. I believe that booking through Mayo Clinic can help if you have to change flights. Something to ask them about for sure.

You find more info here about all things related to travelling to Mayo in MN: http://www.mayoclinic.org/patient-visitor-guide/minnesota/travel-lodging-maps

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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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Funny that you should mention “give me cushion to plan flight back” because at Mayo, heart surgery patients get a heart cushion. We use a picture of the cushion as the picture for Heart Health group. Many have told stories about their cushion and how important it was post surgery.

Liked by janicepike

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Thanks. I just need to get outsde, and be able to do the things I love. Gardening in the spring, is my goal. Strengthen my sterum, and stay motivated.

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@janicepike

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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@janicepike, Feeling down after surgery is really common. I encourage you to start a new topic dedicated to this topic in the HCM group. There are a few among the group who have stories to share. Here’s how to start a new discussion topic:

1. Go to the HCM group page https://connect.mayoclinic.org/group/hypertrophic-cardiomyopathy-hcm/
2. Click START A DISCUSSION
3. Add a title. For example “Post myectomy depression” or “Feeling blue after successful surgery” (Use your preferred words)
4. Write the message and click CREATE DISCUSSION.

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Hang in there Janice. It takes time to heal and get back to your old self. Once you start feeling better hopefully the clouds will start to lift.

If you would like you can read my experiences after my own myectomy 10 years ago at http://www.Cynthiassummeradventure.blogspot.com. Start from the beginning and read
@rushtonrocks, my old blog might help you with your planning as well.

Good luck to all.

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Thanks. I feel.better after reading your first first few weeks

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@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 ! I am 52 year old female who suffered years with HOCM. Last March, I had Septal myectomy, mitral valve replacement, pacemaker and 2 cardiac windows because of bleeding. I spent over 40 days in hospital and went home with openings in scar, infection and pic line. After scar closed and infection cleared I thought it was over. September I had to go back in because scar opened due to infection and needed peck flap surgery.
I am currently pacing at 80 % and had to switch to medicine to stop extra beats. I can’t touch chest area because so sore, and live in fear that this is not over yet. Drs say exercise, that would be great if I wasn’t always tired and short of breath. Is any of this normal? Has anyone had complications like this? I have been through Harrington rod surgery and surgery for Arnold Chiari (brain) and would prefer going through those again than dealing with this! Thank God I have family and friends who are with me every step of the way!

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@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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I wonder if it is caused by your beta blocker. Being so tired. I am getting mine changed up. I refuse to live feeling tired, fatigued, cold and achy.

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@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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I am not sure. My Dr had me on toprol before surgery and all I did was sleep. Then went on atenolol before surgery and I was ok. After surgery and when I started skipping beats they put me on Sotolol 80 mg which I even tried splitting to 40 in am and 40 in pm. He said this was the last one to try.  I live upstate NY so have local cardio Dr here who is affiliated with Columbia Presbyterian in NYC, but I think I will get in touch with one somewhere else to go over everything. Very frustrating

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