1. < Hypertrophic Cardiomyopathy (HCM)
Moderator

HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young, Connect Director @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?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

traceysmith | @traceysmith | Mar 24, 2017
In reply to @traceysmith "Hi all... I'm in the uk. And my docters took over 20years to tell me what..." + (show)
@traceysmith

Hi all... I'm in the uk. And my docters took over 20years to tell me what was wrong. I've been blackin out from the age of 16.... I'm now 39 and was told I had hcm. 3 years ago... every time I had a hcm event I called 999 want to hospital and all looked ok.. I would be in hospital for 1-3 days and then sent home with the all clear. But I'm here :). I have 4 kids and 2 grandchildren. All my kids have been gene tested and all have came bk as clear. Sometimes I do not believe it, all 4 are well..... so my grandchildren will be safe... but any way no more about me.. hi all..... 🙂

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Yes. I've been gene tested.. I'll check that page out now.. many thanks. 🙂

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traceysmith | @traceysmith | Mar 24, 2017
In reply to @kanaazpereira "Hello @traceysmith, Welcome to Connect. We are so glad to have you join us...and such a..." + (show)
@kanaazpereira

Hello @traceysmith,

Welcome to Connect. We are so glad to have you join us...and such a young grandma too!

I'd like to introduce you to @cynaburst @lynnkay1956 @PatMattos @Sensation @rmcmillan @catiemorris @wandikarnadi @barbararickard @lisa7 @lucindag @23273333 @margie11 @fishinglady @uptodate68 @lisa7 @quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford @vivian88 @vialox @janicepike and others in this discussion.

@jigglejaws94 @mogirl92 could you share your insights about the loop recorder?

@traceysmith, do you feel that your heart is beating too fast or too slow? Have you told your doctors about the sinus rhythm and your recent symptoms?

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I've had the loop for about 1 year 5 mouths... it has shown af, tackiecardia and bradycardia, eptopic beats,. (sorry for spelling). I fill my heart 24hours a day, more at nite when I'm in bed... when I got the loop fitted it only took them 10 mins... so much better then wearing a monitor... I tell my docter every thing.. but I'm not sure he hears what I say... (but I may be wrong)

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ataylor8668 | @ataylor8668 | Apr 23, 2017

Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years ago with HCM. Things have progressed to the point that I am having/need the surgery. Have to admit I am a bit terrified, but know I am in Great hands at Mayo. I have also had a couple major surgeries for some unrelated issues, so I have a general sense of the hospital experience.

I have had a history of back problems, and from reading this board, seems like this is a common struggle post surgery. I am thinking I need to go out and buy a recliner to sleep in when I return home....any advice from those who have gone through the recovery process? I have sleep apnea, and do use a CPAP, but have never been able to sleep flat on my back, so I am trying to get something worked out before the procedure.

This all became real this past week, so I am reeling a bit and sure will have additional questions....so thanks in advance for your help.

Cheers

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6 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 23, 2017
In reply to @ataylor8668 "Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years..." + (show)
@ataylor8668

Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years ago with HCM. Things have progressed to the point that I am having/need the surgery. Have to admit I am a bit terrified, but know I am in Great hands at Mayo. I have also had a couple major surgeries for some unrelated issues, so I have a general sense of the hospital experience.

I have had a history of back problems, and from reading this board, seems like this is a common struggle post surgery. I am thinking I need to go out and buy a recliner to sleep in when I return home....any advice from those who have gone through the recovery process? I have sleep apnea, and do use a CPAP, but have never been able to sleep flat on my back, so I am trying to get something worked out before the procedure.

This all became real this past week, so I am reeling a bit and sure will have additional questions....so thanks in advance for your help.

Cheers

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Welcome to Connect HCM, @ataylor8668.
You've come to the right place to get your questions answered about your upcoming HCM surgery at Mayo Clinic. You'll notice that I moved your message to the introductions thread so you can meet other members like. Allow me to introduce you to a few others who have had surgery at Mayo. Please meet @cynaburst @lynnkay1956 @PatMattos @janicepike @ronaldpetrovich @mbcube
@lisa7 @vivian88 and so many others. They can help answer your recovery questions.

You may also wish to read this discussion thread: "What is the recovery like following septal myectomy?" http://mayocl.in/2fdCxHz

Good question about the CPAP machine and surgery. @dawn_giacabazi might have something to add about that in particular. You can also find additional discussions about CPAP in the Sleep Health group: http://mayocl.in/2kSSYM6

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Cynaburst, Alumna Mentor | @cynaburst | Apr 23, 2017
In reply to @ataylor8668 "Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years..." + (show)
@ataylor8668

Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years ago with HCM. Things have progressed to the point that I am having/need the surgery. Have to admit I am a bit terrified, but know I am in Great hands at Mayo. I have also had a couple major surgeries for some unrelated issues, so I have a general sense of the hospital experience.

I have had a history of back problems, and from reading this board, seems like this is a common struggle post surgery. I am thinking I need to go out and buy a recliner to sleep in when I return home....any advice from those who have gone through the recovery process? I have sleep apnea, and do use a CPAP, but have never been able to sleep flat on my back, so I am trying to get something worked out before the procedure.

This all became real this past week, so I am reeling a bit and sure will have additional questions....so thanks in advance for your help.

Cheers

Jump to this post

Hi @ataylor8668 - Sorry you have to have surgery, but glad you are going to a great place.

I did buy myself a recliner for after surgery, and honestly, I found I didn't need it. I slept better propped up with pillows and sleeping partially on my side on the couch. In fact, at Mayo I had a suite and found the sofa more comfortable for sleeping than the bed.

I wrote a blog about my myectomy experience at Mayo which you may find interesting, though it has been quite a few years ago now:

http://www.cynthiassummeradventure.blogspot.com

I have started a new blog that is generally about HCM which has a page of resources about preparing for myectomy which you also may find interesting:
https://hcmbeat.com/resources/resources-for-patients-about-myectomy/
Wishing you all the best as you go forward. Let us know how we can help advise you further.

REPLY
janicepike | @janicepike | Apr 23, 2017
In reply to @ataylor8668 "Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years..." + (show)
@ataylor8668

Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years ago with HCM. Things have progressed to the point that I am having/need the surgery. Have to admit I am a bit terrified, but know I am in Great hands at Mayo. I have also had a couple major surgeries for some unrelated issues, so I have a general sense of the hospital experience.

I have had a history of back problems, and from reading this board, seems like this is a common struggle post surgery. I am thinking I need to go out and buy a recliner to sleep in when I return home....any advice from those who have gone through the recovery process? I have sleep apnea, and do use a CPAP, but have never been able to sleep flat on my back, so I am trying to get something worked out before the procedure.

This all became real this past week, so I am reeling a bit and sure will have additional questions....so thanks in advance for your help.

Cheers

Jump to this post

I was a HAPPY camper in my recliner. Just shows what works for one, and not the other. A day short of 14 weeks out of my myectomy.

REPLY
janicepike | @janicepike | Apr 23, 2017
In reply to @ataylor8668 "Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years..." + (show)
@ataylor8668

Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years ago with HCM. Things have progressed to the point that I am having/need the surgery. Have to admit I am a bit terrified, but know I am in Great hands at Mayo. I have also had a couple major surgeries for some unrelated issues, so I have a general sense of the hospital experience.

I have had a history of back problems, and from reading this board, seems like this is a common struggle post surgery. I am thinking I need to go out and buy a recliner to sleep in when I return home....any advice from those who have gone through the recovery process? I have sleep apnea, and do use a CPAP, but have never been able to sleep flat on my back, so I am trying to get something worked out before the procedure.

This all became real this past week, so I am reeling a bit and sure will have additional questions....so thanks in advance for your help.

Cheers

Jump to this post

I want to bring up the real facts on teeth cleaning, and having a colonoscopy. I am 14 weeks out, and was under the impression that I could get my teeth cleaned after 3 months. Especially after spending thousand dollars and more on periodontal disease before the surgery. It was quit the fiasco going back and forth with the dentist office, and finally getting to the real reason and truth behind the reasoning. I was told that they don t want you to have anytjing done for 6 months. Not to risk any infection. The same goes for a colonoscopy. I am contacting Mayos patient advisery people to hopefully put it in the guides, for after surgery.

REPLY
janicepike | @janicepike | Apr 23, 2017
In reply to @vialox "Thank you everyone for your comments. I really appreciate your stories and experiences with this decease...." + (show)
@vialox

Thank you everyone for your comments. I really appreciate your stories and experiences with this decease.
It is much easier to make a decision being prepared. I have already read a lot of posts on this subject but still feel hungry for more. I am from Illinois and my current symptom progressing makes me thinking how to arrange the appointment with Mayo.
Should I ask my local cardiologist for referral or I can do it on my own? What are the prons and cons for both?
What is an approximate wait time from scheduling until appointment? As I understand I need to see the Mayo's cardiologist first & go through some tests. If he recommends myectomy can I choose a surgeon?

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They do this all the time. Grrrrrrr.

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ataylor8668 | @ataylor8668 | Apr 23, 2017
In reply to @ataylor8668 "Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years..." + (show)
@ataylor8668

Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years ago with HCM. Things have progressed to the point that I am having/need the surgery. Have to admit I am a bit terrified, but know I am in Great hands at Mayo. I have also had a couple major surgeries for some unrelated issues, so I have a general sense of the hospital experience.

I have had a history of back problems, and from reading this board, seems like this is a common struggle post surgery. I am thinking I need to go out and buy a recliner to sleep in when I return home....any advice from those who have gone through the recovery process? I have sleep apnea, and do use a CPAP, but have never been able to sleep flat on my back, so I am trying to get something worked out before the procedure.

This all became real this past week, so I am reeling a bit and sure will have additional questions....so thanks in advance for your help.

Cheers

Jump to this post

Thanks for the response. I am planning on having my teeth looked at by my dentist in the next week or so (if he can squeeze me in) as I was scheduled for July- which is too soon after the surgery. Think I will invest in a recliner. Thanks

REPLY
Ron Petrovich | @ronaldpetrovich | Apr 24, 2017
In reply to @ataylor8668 "Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years..." + (show)
@ataylor8668

Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years ago with HCM. Things have progressed to the point that I am having/need the surgery. Have to admit I am a bit terrified, but know I am in Great hands at Mayo. I have also had a couple major surgeries for some unrelated issues, so I have a general sense of the hospital experience.

I have had a history of back problems, and from reading this board, seems like this is a common struggle post surgery. I am thinking I need to go out and buy a recliner to sleep in when I return home....any advice from those who have gone through the recovery process? I have sleep apnea, and do use a CPAP, but have never been able to sleep flat on my back, so I am trying to get something worked out before the procedure.

This all became real this past week, so I am reeling a bit and sure will have additional questions....so thanks in advance for your help.

Cheers

Jump to this post

First, you are in great hands. In my case, (I had a septal myectomy and double bypass in Dec of 15) the surgery dramatically improved my health. The Mayo team was wonderful from everyone I was in contact with. (Full disclosure,I work here in Public Affairs) I could tell my heart was pumping so much better even after the first day. When it was quiet I could hear the strong heart beats, which I never could before. With that said, the experience was tough the first two days, but it improved quickly. I would recommend that you aggressively try walking and push yourself and enroll in cardiac rehab if at all possible. I would strongly recommend a recliner. We didn't have one after the surgery and that would be one of the first things we would have done in hindsight. It was really hard to get up off the couch or out of bed the first three weeks. I felt like a turtle. Good luck.

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