HCM-ers: Introduce yourself or just say hi

Thanks

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?

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.

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/

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

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.

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?

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.

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...

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????