HCM-ers: Introduce yourself or just say hi

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.

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

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.

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.

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?

Thanks

Hi kanaaz Pereira..he was not having any problem..at regular check up he was diagnosed with some murmur doctor suggested us for 2d eco..after that we came to know that he is having HCM with COA ...at 5 months of age he was operated for COA hoping that HCM will improve .but it didn't help nd later at 1.7 years of age he had another surgery for SCAM...he is under medical supervision nd at present is gredient is 90 Nd doc are sugesting for another surgery..at present he is taking metarol 25 mg twice a day...we have been told that there is no medicine to cure HCM .Is there any further development which can cure HCM.
Their is no family history of HCM

Hi @jshah,

@cabgx6maze517 has written about having Cardiac Artery Bypass Graft x6 with Maze procedure; you can see his comments here:
https://connect.mayoclinic.org/discussion/hi-everyone-i-am-glad-to-be-a-part-of-this-community/
@patinhou was also considering the mini-maze procedure. See her comment here: https://connect.mayoclinic.org/discussion/good-morning-im-almost-66-years-old-with-infrequent-afib-and-on/

@jshah, may I ask why your husband is considering the Maze surgery with the septal myectomy surgery?

Hi Jim Hoffman here. Have gone from marathon runner to barely able to walk around the block. Sound bitter? Yes a bit. I am 81 plus and I guess I should be thankful that I am currently getting up each day. I will try to be more cheerful in the future.

Septal myectomy should make you feel alot better afterward. It will relieve the obstruction your heart is feeling. As for the MAZE, that is usually only done for patients who also have atrial fibrillation before myectomy. The hope is that it will restore you to normal sinus rhythm. I have not had one. It is not that common, but it is not uncommon either. I hope that helps somewhat. Sorry I can't be more specific. As it is open heart surgery, of course, there is always the risk that something will go wrong. However, at an expert center like Mayo, the chances of that are very small.

Wishing you all the best.