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love2shop
@love2shop

Posts: 1
Joined: Nov 06, 2016

Hello Im new hcm member

Posted by @love2shop, Nov 5, 2016

I go to Johns Hopkins in Baltimore 2hrs from home. I have obstructive hcm going to see surgeon Tuesday . so nervous to have a myemectomy. Muscle blocking left ventricle. In perfect health up to three years ago. Shortness and gasping of breath with exertion. I know alot of you have had surgery but i think if i have support from others may reassure me.

REPLY

Hi there,
Your fears are understandable but take a deep breath and listen to the words of encouragement from those that have successfully had this surgery and have their life back! My husband, age 61, with no other significant health history, no pacemaker, etc, was diagnosed with obstruction 1/2016. He had his procedure by Hartzell Schaff at Mayo June 2016, so he is 4 months post op. His most challenging days following surgery, were the first 2 days post op. but when you are at a Center of Excellence with such a skilled team of doctors and nurses that specialize in caring for individuals with this disorder every day, and work hard at doing everything they want you to do post op, you will be on your way to feeling so much better. I understand that everyone’s journey and health history is different, and the outcome can be a bit slower if you have other health issues ( which we did not have). But everyone feels better when they are getting their blood circulating to all the right places with a heart that is pumping proficiently. He was walking a mile easily at 1 month post op!! He never required pain meds when we returned home! He just completed 3 months of post op cardiac rehab ( while working full time) and is doing quite well. He returned to work full time as a college professor and chairman of his dept. 2 months following his procedure. He still benefits from an afternoon nap which her rarely gets on week days due to his schedule, so he often will take a nap before dinner. The important thing is to get to a HCM Center of Excellence to have this done, which I understand that Johns Hopkins is ( Good job on referral from your primary DR!!) Make sure you join the the HCM Assoc. for support and educational information. Purchasing and reading the publication they offer ON HCM by Barry Maran and Lisa Salberg, helped us greatly as well as Lisa’s preop teaching. Your quality of life will be given back. Finally, our prayers and the prayers of so many lifted us through much anxiety We had incredible peace and trusted our entire team. I hope these words will bring you encouragement this morning as you face this important healing step in your life.
I wish you a very successful outcome and God’s amazing peace and healing. Take Care. Carol Moshier

Liked by vivian88

I had a myectomy 10 years ago and am so glad I did. It is scary before, but well worth it in the end.
If you are interested, I wrote a blog about my experience:

http://www.cynthiassummeradventure.blogspot.com

Also, I write a blog now with a myectomy resources page:

http://www.hcmbeat.com/resources/resources-for-patients-about-myectomy/

You may find some stuff that is helpful there too.

Wishing you all the best. You are in good hands at Hopkins.

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