HCM-ers: Introduce yourself or just say hi

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?

Hello, looking forward to some guidance and or experiences.

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Hello. I have HCM. I went through surgery on January 9 th, of this year. Best decision I ever made. Make an appointment, and go from there, is my suggestion.

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@mehlisue

My name is Melinda. I am 60 years old. I was diagnosed with HOCM in 2004. Medication is no longer able to control the issues. I have Septal Myectomy date November 20th 2017. I had to put off my surgery because two years ago getting ready for heart surgery, breast cancer was discovered. After surgery and treatment for this, It was obvious way to much time had passed and now in the middle of cancer treatment, I have no choice left but surgery. I will survive the Cancer and I am hopeful with the heart surgery. So many issues are involved at one time has me concerned. The doctors are confident. They say this will improve my health so much that I will be shocked at how well I feel. That is encouraging to hear. Has anyone else gone through this surgery with a Mastectomy on the right side and how much did that impact the recovery as it appears from post here that upper body strength is great diminished from the heart surgery? I have almost 80% use on mastectomy side, limited range, but I still plow through daily house chores. I would rather deal with reality than be surprised and find out the recovery and pain issues are not what I expected. I need to plan for in home help I think? Thanks Melinda

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that sounds encouraging.

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In reply to @zargul "Hi" + (show)
@zargul

Hi.

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Hello @mehlisue,

I’d like to welcome you and thank you for reaching out to the Connect community. The Breast Cancer group on Connect, https://connect.mayoclinic.org/group/breast-cancer/, also has some incredibly informative discussions that might interest you.

With regard to the myectomy, we have a great discussion on Connect, which I would encourage you to view:

– What is the recovery like following septal myectomy? https://connect.mayoclinic.org/discussion/what-is-the-recovery-like-following-septal-myectomy/
I’m tagging @lynnkay1956 @lamborama @mbcube @vivian88 @PatMattos @ronaldpetrovich @eelnaloblob18 @1949 @wintergirl8 @vialox @vivian88, to see if they would share their recovery experiences.

What concerns you the most, @mehlisue?

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Hi my name is Jinal. My husband is 33 years old and was diagnosed with HCM. He is scheduled for Septal Myectomy surgery in Jan 2018. I had few questions:

1) After the surgery can we drive back to Chicago ( 6hr) or taking a flight would be better because of of bumps and snow on the road.

2) Are there any restrictions on food after the surgery.

3) My husband has Afib as well. Has anyone got the MAZE Procedure done with the Septal Myectomy surgery?

4) If you did the MAZE Procedure how was it and are there side effects????????? please help with this question..

5) What is the worst case scenario is the Septal Myectomy surgery????

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Hi I’m Neha from India…my 6year old son has HCM ..already had two surgeries…gredient StilL 90..doc suggesting another open heart surgery…

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Hi Neha,

I hope your kid gets better soon. How did you find out he had HCM? What were his symptoms that made you go to the doctor.

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Hi

Has anyone got the MAZE Procedure done with the Septal Myectomy surgery?

If you did the MAZE Procedure how was it and are there side effects????????? please help with this question..

What is the worst case scenario is the Septal Myectomy surgery?

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Thanks…the lady who massage my baby she said something is wrong..he had some problem in stomach get it check.
We said same to doc .. he checked him nd at the age of 4 months he was diagnosed with HCM.

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@neha4

Thanks…the lady who massage my baby she said something is wrong..he had some problem in stomach get it check.
We said same to doc .. he checked him nd at the age of 4 months he was diagnosed with HCM.

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I am very sorry to hear that. He will get better soon..:)

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@jshah

Hi my name is Jinal. My husband is 33 years old and was diagnosed with HCM. He is scheduled for Septal Myectomy surgery in Jan 2018. I had few questions:

1) After the surgery can we drive back to Chicago ( 6hr) or taking a flight would be better because of of bumps and snow on the road.

2) Are there any restrictions on food after the surgery.

3) My husband has Afib as well. Has anyone got the MAZE Procedure done with the Septal Myectomy surgery?

4) If you did the MAZE Procedure how was it and are there side effects????????? please help with this question..

5) What is the worst case scenario is the Septal Myectomy surgery????

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I had a myectomy in 2006. I found that getting home the fastest way possible was best. If you drive, you will have to stop often so he can get out and stretch. I did have some restrictions for a week or two of low sodium. I was also anemic so I had to eat and supplement iron after surgery. I did not have the MAZE procedure, but did have transient Afib after surgery which subsided in the weeks after surgery.

I wrote a blog about my myectomy experience which you can read. It is here: http://www.cynthiassummeradventure.blogspot.com

I also write a current blog with alot of resources about myectomy which you may want to check out:

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

Wishing you all the best.

P.S. if you are on Facebook, there is a Mayo HCM Community on there where you may find more patients.
https://www.facebook.com/groups/MayoClinicHCM.Patients/

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@neha4

Hi I’m Neha from India…my 6year old son has HCM ..already had two surgeries…gredient StilL 90..doc suggesting another open heart surgery…

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Are you familiar with the Children’s Cardiomyopathy Foundation? http://www.childrenscardiomyopathy.org/

They have patient support specialists and other families going through similar issues. They may be able to assist you.

Wishing you all the best.

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@neha4

Hi I’m Neha from India…my 6year old son has HCM ..already had two surgeries…gredient StilL 90..doc suggesting another open heart surgery…

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Hello @neha4,

Welcome to Connect. As a parent, I can imagine how worried you must be, and we’re so glad you’ve joined this group. I’d encourage you to view this webinar, where Dr. Joseph Dearani, Mayo Clinic cardiac surgeon, talks about pediatric congenital heart disorders: https://connect.mayoclinic.org/webinar/askthemayomom-about-congenital-heart-disease-and-pediatric-heart-transplants-1/

I sincerely hope @traceysmith @carjes @mbcube @ronaldpetrovich @debcrawford @pegan @sandys5546 @mollyb1968 and other fellow Connect members will share insights about their journey with HCM, as well.

In the meantime, you may also wish to view this Mayo Clinic webpage, and read some of the younger HCM patient stories:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208
@neha, we look forward to getting to know you; what symptoms did your son have, before being diagnosed? May I ask if there is a family history for HCM?

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