1. < Hypertrophic Cardiomyopathy (HCM)
Profile picture for Colleen Young, Connect Director
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.

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mbi | @mbi | 5 days ago
In reply to @walkinggirl "@mbi I am so glad to read your great report! I am impressed that you were..." + (show)
Profile picture for walkinggirl @walkinggirl

@mbi I am so glad to read your great report! I am impressed that you were discharged so quickly! Yes, I think those who are more fit recover quicker - core and sit-ups help as you pointed out, I discovered that going to the gym and walking paid off. I remember the fatigue you describe which may be more from the anesthesia, on day four I noted (I kept a small journal) that it was the first day the desire to nap disappeared. I was discharged on day 5, at home a week after surgery. Like you, I was no spring chicken at almost 76, but here we see age is just a number. Wishing you a continuing great recovery and I hope walking becomes a permanent activity for you.

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@walkinggirl
I’m sure going to try to keep walking. I have walked most of my adult life. When I was young, I walked to manage my weight, and now I walk to keep my energy up and stay as healthy as I can. At 3 and a half post surgery, I’m up to 5000 steps, although I need to break it up into 4 walks.
It’s all about slow, steady and consistent. I tend to get impatient though, lol.

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mamafacion | @mamafacion | 4 days ago

My name I jen and I live in cedar rapids Iowa. I was diagnosed with HOCM within the past 3 years. I take camzyos EF. However, my Max vo is only 11.6. They want to evaluate me for heart transplant but they've told me I'm too overweight. I can't take GLP ones because my mother had medullary thyroid cancer and I really am not comfortable with having bariatric surgery. So now I'm stuck and feeling really stressed and overwhelmed and sad

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Mentor
Debra, Volunteer Mentor | @karukgirl | 4 days ago
In reply to @mamafacion "My name I jen and I live in cedar rapids Iowa. I was diagnosed with HOCM..." + (show)
Profile picture for mamafacion @mamafacion

My name I jen and I live in cedar rapids Iowa. I was diagnosed with HOCM within the past 3 years. I take camzyos EF. However, my Max vo is only 11.6. They want to evaluate me for heart transplant but they've told me I'm too overweight. I can't take GLP ones because my mother had medullary thyroid cancer and I really am not comfortable with having bariatric surgery. So now I'm stuck and feeling really stressed and overwhelmed and sad

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Hi @mamafacion, and welcome to Mayo Clinic Connect.
I'm glad you found the HCM support group.
I understand how frustrated and sad you must be feeling, especially about being evaluated for a heart transplant. That has to be a pretty scary thought!

I also understand that you feel trapped because of your weight, fear of bariatric surgery and not being able to use GLP1 medication.
I found this on the Mayo Clinic regarding GLP1 and thyroid cancer, take a look, you may find it interesting:
https://www.mayoclinic.org/medical-professionals/endocrinology/news/glp-1ra-and-thyroid-cancer-new-study-suggests-detection
It may feel hopeless, but have you considered this situation an opportunity?
Does that sound strange?
Turn this unfortunate situation into an opportunity.
An opportunity to do some deep soul searching, looking for the commitment to be the best you possible.
A wake-up call to come live your life the healthiest and best you can.

I know it is not easy to lose weight.
Food is such a powerful addiction for so many of us. It is unlike other additions, such as cigarettes, alcohol, or drugs...we DO NOT need them to live.
But we NEED food to live.
The problem is we use food as a reward for stress, for happy, for sad, for boredom, for self-loathing, self-medication. It hits all the pleasure centers in the brain and the 'high' you get from the object of your affection (pizza, chips, ice cream, etc) is temporary and goes away, leaving you craving more, and more again when the 'high' wears off.
Vicious cycle that keeps you feeling like a failure, giving up and giving in to food.

Have you thought about seeking out a dietitian or food counselor? Perhaps your physician can recommend a local dietitian in your area.

Have you thought about joining any online support groups?:
https://www.forbes.com/health/weight-loss/best-weight-loss-program/
https://diet.mayoclinic.org/us/
https://www.allencarr.com/easyway-stop-emotional-eating/
This may sound tough, but this is in your control...you have the power. The Allen Carr book is really good. It gets into the psychology behind the addiction and helps you understand why we eat like we do and how to break the cycle. For good.
Are you able to exercise or walk much? Walking any distance is a great mood lifter.
Walking is like free therapy.
Do you have a hobby you enjoy that brings you joy?

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