Congestive Heart Failure Community
pediatric CHF due to dilated cardiomyopathy
About This Community:

This patient support community is for discussions relating to Congestive Heart Failure (CHF).

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

pediatric CHF due to dilated cardiomyopathy

My daughter is 9 yrs old born with a metabolic disorder and diagnosed with dilated cardiomyopathy at age 3.  Recently diagnosed with CHF, 25% heart function, enlarged heart & ventricular tachycardia. Doctors managed to stabilize her and three weeks later (today) she was discharged from Children's hospital.  Cardiologists are doubtful she will have long to live; they seem to almost give up on her case.  She is registered for palliative services as she does not qualify for heart transplant and they don't recommend surgery or heart devices; they just want her to go home to live what little life she has left.  Everything that is happening is so surreal and I don't want to just accept that we may lose our daughter any day soon.  I guess I just want to hear a positive story that is similar to hers, so we can gain strength from others.  Thanks.
Related Discussions
Avatar f tn
When my daughter was a child, the doctors told us to take her home and let her live what childhood she had left; I think she was about 8-9. They told me to spoil her......I never did and was glad for it. She had a transplant at 22!!. She is now 33 and it hasn't been an easy road. her EF% as I write is now 15%, down from 42% on her last echo. I know what it is like to have doctors seem to give up on a child. Don't you EVER stop fighting for her. One doctor told me that I was almost impossible for him to give up on my daughter because of how hard i was fighting for her. If you ever want to talk, let me know through leaving me a message on my page. take care!
Blank
Post a Comment
To
Blank
BloodPressure Tracker
Track your Heart Condition
Start Tracking Now
Recent Activity
Avatar n tn
Blank
markbenz commented on 010216
Jun 30
17568 tn?1424977159
Blank
Cindy is... Comment
Jun 29
168348 tn?1379360675
Blank
ChitChatNine is having fun! Comment
Jun 29
Congestive Heart Failure Community Resources
RSS Expert Activity
233488 tn?1310696703
Blank
Marathon Running Done Over Many Yea...
05/15 by John C Hagan III, MD, FACS, FAAOBlank
233488 tn?1310696703
Blank
New Article on Multifocal IOL vs &q...
05/15 by John C Hagan III, MD, FACS, FAAOBlank
748543 tn?1463449675
Blank
TMJ/TMJ The Connection Between Teet...
01/15 by Hamidreza Nassery , DMD, FICOI, FAGD, FICCMOBlank
Top Heart Disease Answerers
11548417 tn?1440481484
Blank
Ger57
Netherlands