← Return to My 11 year old was diagnosed with HCM

Discussion

My 11 year old was diagnosed with HCM

Hypertrophic Cardiomyopathy (HCM) | Last Active: Oct 6, 2021 | Replies (19)
Comment receiving replies
@knecht

@ccubed . My daughter was diagnosed with Hypertrophic Cardiomyopathy at 16. She was the starting point guard on her varsity team and starting setter on volleyball team. She had a septal myectomy two and a half years ago at Mayo in Rochester, MN. Any questions please ask, I know the scared mom feeling you are not alone.

Jump to this post

Replies to "@ccubed . My daughter was diagnosed with Hypertrophic Cardiomyopathy at 16. She was the starting point..."
oldkarl | @oldkarl | Aug 30, 2018

@knecht and @mommiesboy1 I was diagnosed with HCM as an early teen, probably about 14. I missed some sports, but played football in college, backpacked and ran until about age 55. Now I am learning that what I really have, apparently, is Amyloidosis AL, probably Gelsolin or similar. I went through syncope, tachycardia, pain, broken teeth, purpura, sFLC, now have protein deposit in my cerebrum cortex, and seem to getting into dementia. Et Cetera.... I am now 78, and I need treatment now, but it is difficult to obtain. Doctors seem to forget that it is progressive, and what did not show two years ago may be killing now.. https://bit.Ly/1w7j4j8

VIEW AND REPLY
auntsuzie33 | @auntsuzie33 | May 16, 2021

My grandson was just diagnosed with Hypertrophic Cardiomyopathy, he is 15. Myself, his parents and family are terrified of this diagnosis. He was diagnosed with heart murmur at age 6 and the follow up echocardiogram didn’t show any issues. At age 13, they found that the left side of his heart was enlarged slightly, they did a wait and see approach. They thought it might be puberty etc. and hoped that he would outgrow this ( not sure if I’m saying that right). He is being sent to a Cardiologist at Vanderbilt Hospital for a cardiac MRI. That is all we know at this time.

At 15 the echocardiogram showed no improvement, and that his heart is two times the normal size, if I understood that correctly.

I was wondering about your daughters experience and symptoms before surgery and her success after surgery.

My son is so worried that this diagnosis is a death sentence. My grandsons only symptom is he out of breath when he plays strenuous sports.

Any information will be much appreciated!

VIEW AND REPLY