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.

Mentor
Debra, Volunteer Mentor | @karukgirl | Feb 2 3:40pm
In reply to @hncm "I'm Barb, 77, previously healthy, lifelong scuba diver, sailor (international 50'+ sailboats), swimming, cycling, kayaking, paddleboarding,..." + (show)
@hncm

I'm Barb, 77, previously healthy, lifelong scuba diver, sailor (international 50'+ sailboats), swimming, cycling, kayaking, paddleboarding, hiking, etc. Never smoked, don't drink, no diabetes, no high bp, no CAD, but sleep apnea with CPAP (which I've been very bad at wearing regularly). Suddenly after an "event" I was diagnosed with HCM! Wait . . . what???? So now what? Glad to find this group because currently feeling helpless and hopeless and want my old life back (especially scuba)!

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Hello Barb, @hncm, I see you are new around here! Welcome to Mayo Clinic Connect.
I'm glad you found this online support group too. It's amazing how good it feels to learn you are not alone. Especially since you were blindsided by this diagnosis.
You sound so active and healthy with an incredible life...no wonder you are scared. I think we pretty much all were when finding out about this HCM/HOCM stuff.
With such an active lifestyle, have you found that you can no longer do your favorite things? Or have you been advised not to until further testing?
Helpless and hopeless are negative feelings. Do not allow them to take control.
You need to educate yourself on everything you can about this condition and be the leader in your own journey.
Have you read this from the Mayo?:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Or this from 4HCM?:
Hypertrophic Cardiomyopathy Association
https://www.4hcm.org
I remember well feeling frightened and scared I was going to die every time I hiked or danced. I was told not to ride my Harley anymore until I had further testing...so I get feeling depressed. HOCM takes so much joy from living.
Is your doctor well trained in HCM?
Have you thought of a second opinion? I had three!
When is your next appointment? Have you been given options for treatment?

REPLY
cynthia1gendteau | @cynthia1gendteau | Feb 1 9:56pm
In reply to @05357 "I was diagnosed with broken heart syndrome. My ejection/fraction was at 26. I have been wearing..." + (show)
@05357

I was diagnosed with broken heart syndrome. My ejection/fraction was at 26. I have been wearing the life vest for 3 months - has anyone here wore the vest

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Yes I have worn it for 2 1/2 months. Ejection fracture was 35%. Am having another echo mid-February

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hncm | @hncm | Jan 26 1:36pm

I'm Barb, 77, previously healthy, lifelong scuba diver, sailor (international 50'+ sailboats), swimming, cycling, kayaking, paddleboarding, hiking, etc. Never smoked, don't drink, no diabetes, no high bp, no CAD, but sleep apnea with CPAP (which I've been very bad at wearing regularly). Suddenly after an "event" I was diagnosed with HCM! Wait . . . what???? So now what? Glad to find this group because currently feeling helpless and hopeless and want my old life back (especially scuba)!

REPLY
1 reply
bbranin | @bbranin | Jan 21 10:40am

Hello Everyone, I’m Bruce. I was Diagnosed with Obstructive HCM approximately 1 1/2 yrs ago. On Camzyos 5mg. I’ve had improvement with shortness of breath. I particularly found everyone’s experience with insomnia with AM dosing. I appreciate everyone’s contributions.
REPLY
mrsblueskies | @mrsblueskies | Jan 13 9:17am
In reply to @karukgirl "Welcome @mrsblueskies, and I am glad you made your first post! I was a stalker on..." + (show)
@karukgirl

Welcome @mrsblueskies, and I am glad you made your first post!
I was a stalker on Connect too before I posted. I read every post I could about this HCM/HOCM stuff, and read everything online I could google!
Your journey sounds like so many others, including mine! It is so interesting that we all seem to have some things in common.
I like that you are trying to get as much information as you can before you decide with your doctor the best course for you. It sounds like you are active and healthy otherwise, which will be to your advantage with open heart surgery or Camzyos.
I was on multiple meds before I knew what I had. My cardiologist had misdiagnosed me with four or five different conditions and it took going to two different COEs (Center of Excellence) before the true culprit was determined. I had a murmur most of my adult life. And like you, looking back I can recall issues that may have been HCM but never addressed. It was as if we just "walked it off" like when we were kids.
When your HOCM begins to take away the things you love to do, like hiking, walking and dancing...you are faced with decisions. Only you know what is right for you and going forward you will be armed with information and ready to take this on!
I had open heart surgery. Camzyos was not an option due to clinical trials. Minimally invasive myectomy also was not an option due to location of my HOCM. So I faced the surgery with fear and trepidation, but have strong faith that brought me through. And the Mayo Clinic!
All I knew was I did not want to live like I was. I could barely do anything I loved without gasping for air, wild heart racing, debilitating fatigue...and all the other symptoms of HOCM.
I have never regretted having surgery. It gave me my life back and I no longer need any medications except one 81 mg aspirin a day.
Have you had a chance to read the Camzyos group posts? When do you see your doctor next?

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Thank you. Yes, I have been reading the posts for awhile. It helps knowing that others have faced the same thing. I see my doctor tomorrow. I am hoping to try Camzyos. Will see.

REPLY
frankkylerobinson | @frankkylerobinson | Jan 12 12:42pm
In reply to @karukgirl "Hello @johnlich, and welcome to Mayo Clinic Connect. I am glad you are here and shared..." + (show)
@karukgirl

Hello @johnlich, and welcome to Mayo Clinic Connect.
I am glad you are here and shared your story.
Have you taken a cruise around Connect and read up on HCM? Here is a link from the Mayo Clinic that has some good information about HCM both diagnosis and treatments:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/diagnosis-treatment/drc-20350204
And here is a link to the Hypertrophic Cardiomyopathy Association:
https://www.4hcm.org
HCM can lead to HOCM, or obstructed hypertrophic cardiomyopathy. Only your cardiologist or HCM specialist and you can decide what the best course of treatment is for you. For some Camzyos is a place to start. For other beta or calcium channel blockers help with symptoms, and for some, like myself, open heart surgery to remove the blockage is the treatment.
It seems, based on my experience and opinion, that many people with HCM progress to HOCM and that is when your quality of life goes south. Once you are no longer able to do what you used to with ease and find the most routine and mundane activities cause you to gasp for air and your heart races and you have chest pain...that is usually when we seek treatment, because...well...because we can't do things we love any longer.
When do you plan to see your cardiologist? Are they up to speed with Hypertrophic Cardiomyopathy? That is super important. And you need to also become as educated on your condition as possible so you can be your own best advocate. Sometimes it takes a second opinion or even a third opinion to reach the right place for treatment. It took me three opinions, and the last one with at the Mayo Clinic in Rochester. They truly are the best in the world for all things HCM.
You sound like a super healthy person, so no wonder it is so frustrating to lose the ability to do the things you love, and to enjoy doing them!
Do you have plans to see your doctor soon?

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Hi to all, I have learned more on this site then from my Cardiologist a big thank you to all on using this site

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frankkylerobinson | @frankkylerobinson | Jan 11 6:29pm

Thanks for the welcome
I have found out more
about my HCM on this site then from my Cardiologist over the past three years
I will continue on this site and exchange information with those members
Thanks for the welcome aboard

REPLY
Mentor
Debra, Volunteer Mentor | @karukgirl | Jan 11 10:48am
In reply to @johnlich "Hi Colleen, I have been living with HCM for several years now and really noticed a..." + (show)
@johnlich

Hi Colleen,
I have been living with HCM for several years now and really noticed a decrease in my energy and ability to breath especially when walking up hill. I play hockey regularly and the last year or two I have shortened my shifts because of lack of breath.

I am a woodworker and photographer and find now wearing a mask doing woodwork is exhausting after a few hours as the mask restricts the air I am getting into my lungs.

I am planning on doing less live edge woodwork (which I Love doing) and doing more photography where your outdoors with wildlife which is also very exciting.

I was writing to you today to see if there are any cures or operations that I can get so my breathing gets back to normal so i can continue to do the physical activities I enjoy?

John

Jump to this post

Hello @johnlich, and welcome to Mayo Clinic Connect.
I am glad you are here and shared your story.
Have you taken a cruise around Connect and read up on HCM? Here is a link from the Mayo Clinic that has some good information about HCM both diagnosis and treatments:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/diagnosis-treatment/drc-20350204
And here is a link to the Hypertrophic Cardiomyopathy Association:
https://www.4hcm.org
HCM can lead to HOCM, or obstructed hypertrophic cardiomyopathy. Only your cardiologist or HCM specialist and you can decide what the best course of treatment is for you. For some Camzyos is a place to start. For other beta or calcium channel blockers help with symptoms, and for some, like myself, open heart surgery to remove the blockage is the treatment.
It seems, based on my experience and opinion, that many people with HCM progress to HOCM and that is when your quality of life goes south. Once you are no longer able to do what you used to with ease and find the most routine and mundane activities cause you to gasp for air and your heart races and you have chest pain...that is usually when we seek treatment, because...well...because we can't do things we love any longer.
When do you plan to see your cardiologist? Are they up to speed with Hypertrophic Cardiomyopathy? That is super important. And you need to also become as educated on your condition as possible so you can be your own best advocate. Sometimes it takes a second opinion or even a third opinion to reach the right place for treatment. It took me three opinions, and the last one with at the Mayo Clinic in Rochester. They truly are the best in the world for all things HCM.
You sound like a super healthy person, so no wonder it is so frustrating to lose the ability to do the things you love, and to enjoy doing them!
Do you have plans to see your doctor soon?

REPLY
1 reply
johnlich | @johnlich | Jan 10 12:18pm
In reply to @colleenyoung "Hi Connect HCM-ers @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag..." + (show)
@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.

Jump to this post

Hi Colleen,
I have been living with HCM for several years now and really noticed a decrease in my energy and ability to breath especially when walking up hill. I play hockey regularly and the last year or two I have shortened my shifts because of lack of breath.

I am a woodworker and photographer and find now wearing a mask doing woodwork is exhausting after a few hours as the mask restricts the air I am getting into my lungs.

I am planning on doing less live edge woodwork (which I Love doing) and doing more photography where your outdoors with wildlife which is also very exciting.

I was writing to you today to see if there are any cures or operations that I can get so my breathing gets back to normal so i can continue to do the physical activities I enjoy?

John

REPLY
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