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?

@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!

Liked by mimix4

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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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@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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You are in great hands. You may no t even remember that. When I had my septal myectomy/double bypass in Dec. of 2015, I didn’t recall that part of the procedure and I’m happy about that. Even though we prepared and did research, my wife said it was a jarring when she saw me. Post op too, with the tubes in your chest and neck, that is startling to others as well. When I came to, I felt great and was even singing in ICU, for about 45 minutes. Then I started to wake up, and I can say the first day and a half wasn’t the most fun, and yes it hurt, but I have to say, it was all worth it and I would totally do it again. The care was outstanding!!! I felt better two days later, and you will most likely be walking either the day of, or day after surgery. The walks won’t be far, but just getting to the hallway is a big step on the first day. I was 55 when I had my surgery and I have not felt this good in decades. Note, I live in Rochester and work at Mayo in Communications. When I got home too, I needed help and I was lucky that my wife was there. You need to be careful with wound care, and will use a lot of wash clothes and towels. I was like a turtle and couldn’t turn over for the first two weeks, so if you have a recliner, use it. If you have the $, I’d advise getting on. Today, I’m running several miles a week, lifting light weights and am so glad that I did this.

If you need anything, in person next week, please message me, and we can try to connect. Good luck.

Liked by pbo2016

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Hi, I’m Sandy. Diagnosed with HOCM
2 years ago. Could be facing surgery and am be worried.

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hello I wanted to discuss anybody who had a heart cath

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were I’m going to have a heart cath they don’t do stents if I needed a stent would have to by ambulance to another hospital. is that safe

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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 am scheduled March 7th for Septal Myectomy at Mayo in Rochester. We will be flying in on Sunday, full day of testing on Monday. I too have been trying to plan without really understanding what is involved. So many things to think about. Maybe we will bump into each other in Rochester

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@ladyjansen

were I’m going to have a heart cath they don’t do stents if I needed a stent would have to by ambulance to another hospital. is that safe

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I’m wondering why you aren’t having the heart cath at the hospital where they could do the stent if you need it?

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@sandys5546

Hi, I’m Sandy. Diagnosed with HOCM
2 years ago. Could be facing surgery and am be worried.

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Welcome @sandys5546,
I encourage you to read this discussion called “Diagnosed with HOCM last year. May be time for surgery” http://mayocl.in/2ef1nMc. Barbara brought forward a similar concern and got great advice from fellow members.

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@ladyjansen

were I’m going to have a heart cath they don’t do stents if I needed a stent would have to by ambulance to another hospital. is that safe

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Hi @ladyjansen,
I’m tagging @mimi68 and @hopeful33250 on this conversation, both of whom have had a heart catheterization. Hopefully they can help you with your questions. I agree with @pbo2016. Wouldn’t it be better to get heart cath where they could also do the stent if necessary?
LadyJansen, have you been diagnosed with HCM?

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@ladyjansen

hello I wanted to discuss anybody who had a heart cath

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Hello @ladyjansen, When is your heart cath scheduled? Were you having specific symptoms that led your doctor to suggest this procedure? I had a heart cath just last year and had a lot of anxiety about it, however, the procedure is really very easily done and goes quite well. The hospital I went to, just received approval to do stents (rather than being taken by ambulance somewhere else), however, I did not need that type of treatment as it turned out. The catheter was threaded through my wrist so the recovery was quicker and I was out of the hospital after a couple of hours. Do you know if your catheter will be in the wrist or through the groin? If the groin is used the time in the hospital afterwards is a bit longer. Heart caths are great ways to rule out serious heart problems, they allow the doctor to see what’s going on first-hand. I have electrical problems and my EKGs can look positively scary so the cath ruled out more serious problems. Please keep in touch and let us know if there are any questions you have. Teresa

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