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?

@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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@cynaburst

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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I blew snow two days ago. I can almost do everything, but lifting heavy stuff.

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Hi,
I’m Melissa and started out with HOCM with atrial fibrillation. I was cardioverted a few times and then had an Alcohol Ablation which did get rid of the obstruction but 2 years later it’s back. I am going to try it again. They say it happened because I have been taking strong medicines for 30 years. I had 3 kidney transplants. I just wanted to say hello and learn from you. Thank you!

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@melissax3

Hi,
I’m Melissa and started out with HOCM with atrial fibrillation. I was cardioverted a few times and then had an Alcohol Ablation which did get rid of the obstruction but 2 years later it’s back. I am going to try it again. They say it happened because I have been taking strong medicines for 30 years. I had 3 kidney transplants. I just wanted to say hello and learn from you. Thank you!

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Melissa – are you seeing a HCM specialist? With your complications I would want to be sure you are getting appropriate care.

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Yes, thank you. I see a lot of doctors!

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@colleenyoung

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.

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Hi everyone!
I am a manager of a very unique cancer center. My specialty is Radiation Oncology. I know cancer better than cardiology, but my docs were residents at Mayo and say I have the best care possible there!
I fly out from my home in Billings, MT in the a.m. to Mayo in Rochester. Getting my workup this week, followed by septal myectomy next Monday. This feels like a big deal to me. I was referred after being pulled off a stress echo in January by my cardiologist. I turn 60 on March 20th. This was a shocker having to get this done. Thought I could wait a few more years. But, I get it. My biggest fear is waking up intubated. After that I accept a lot of rehab to get back to a wonderful life. I am spending my time in Rochester alone, so will just try to relax and be positive before the operation. My brother will arrive the night of surgery and be around after that.
I am very anxious. I am the worst patient and just want to be independent, but I know I have to let go of that.
Thanks for listening to me. Pace

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@colleenyoung

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.

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One thing I tell folks having a myectomy is that yes – you will wake up intubated. BUT you are in a fog and if you remember to just let the medication keep you in LaLa Land and R E L A X, the tube is really nothing. Hey I gag at the dentist so I was concerned. The nursing is one-on-one there and they do a great job of keeping you in this state. Just try to breathe as fully as you can – the faster your 02 levels go up, the sooner mister tube is gone. Try to do some really DEEP breathing beforehand for a few days it’ll help you immensely.
Good Luck – you will do fine.

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