HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young @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?

@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.

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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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@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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Dear Pace, I had a septal myectomy for hypertrophic obstructive cardiomyopathy in November 2014. Despite the ordeal of surgery and recovery, I am so thankful that I went to Mayo Rochester. My mother was diagnosed with HCM when she was 61 and had an alcohol septal ablation. It was very ineffective, she survived to age 68 continuing to have symptoms, and had SCD. She did not have an ICD. I hope that you do. I have an ICD and I was diagnosed at 51 and I am now 56. I was the happiest person in the world to be going into the operating room, because I knew if I did not have the surgery I would not survive, I felt I had maybe less than a year. I am a registered nurse, and although I still have some chest and heart pain, I was able to return to work.
My primary reason for responding to you is that I did wake up INTUBATED. It was more uncomfortable, not really painful, just sore and of course VERY INVASIVE. Being a nurse, I knew immediately not to try to pull it out, they would have simply reintubated me. My oxygen saturation levels were very low. But the staff in CCU was very reassuring and kept me informed.
I now do yoga several days a week, and I wish I had had good breathing, relaxation, and meditation techniques prior to surgery, that I have developed in yoga. I don’t know the % of patients at Mayo who remain intubated after surgery. I can tell you that whatever your condition, or needs after surgery, they will make sure your care is outstanding. I knew they would not let me die. It is really the best medical care in the world.
I GOT MY LIFE BACK. IT WAS WORTH IT.
Please reply if I can help you.
Kindest regards and heartfelt best wishes for
you, Lisa

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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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Hi @melissax3, I’d like to add my welcome. With the information you provided in your intro message, I’d like to let you know about a few other places you may wish to participate in.

Join others talking about HOCM here:
– Diagnosed with HOCM last year. May be time for surgery” http://mayocl.in/2ef1nMc

Meet other transplant recipients here:
– Transplants group http://mayocl.in/1qunnTn

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Thank you Colleen foe invitation. Hello everyone! Glad that was fortunate to find this group.
Hope to educate myself with your help and contribute with my story.
I am 52 male, who was diagnosed with HOCM 1 years ago. Frankly playing back my last 10 years can tell that gradually was loosing energy and developing HCM related symptoms like SOB, chest pain dizziness. At the beginning of this period I was able walking for 2 hours at 4.2mph (maybe longer), now 20 minutes of uninterrupted walk for relax and breath taking for 20 minutes at 3.3mph is considered as not bad. After Dx tried different Beta- and Calcium channel blockers. Very refractive to both, especially to the latter one. Now taking small dose metropolol (12.5mg). Looking for possibility of symptoms alleviation at Myo, since learn many good things about the Clinic’s Drs and Surgeons at Lisa Salberg’s HCMA site and Cynthia’s blogs.

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