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marta
anonyymous
Sun May 31, 2015 9:53am
71.237.200.222

hi my name is marta and I am just turned 46 years old a few days ago. glad to read your post. I was the oldest living with not otc[sorry] but citurllinemia] I was good ammonia wise went to the hospital a lot a lot in my 20's and older noithing changed. I allways followed the low protein diet and took my medication. it was real hard for me to be the oldest living with citrullinemia because I never had somebody to talk to my age to ask how are you today? how are you feeling? etc. then in 211 citullinemia got the best of me although I did everything right to a t. I started having adimission to the hospital instead of twice or three times a month every 6 days with high ammonia and would return home medicaly unstable. the metabolic dr said their is 2 20 year old kids that died of liver faluier and with your daughter's condtion that keeps going the wrong way I don't want her to be the next one to die. so I had a liver transplant cause I had no other choice. I was transplanted june7 213. although citrullinemia free. I had to go through counseling for the grief and loss of citrullinemia because I had it for 44 years. they found out my liver had cirosiss and was half dead. how is daughter doing? how often does she go to the hospital if she has problems with her ammonia? where do you live? I live in Portland Oregon. and I am followed but a family medicine dr and a liver dr and shrink for anxierty, panic disorder, depression glad to read your post sorry I did not have the same illness. is your daughter able to have a job? I know with citullinemia I was too unriable and could not have a job so I never even looked for one. marta

  • No SubjectAnonymous, Sat May 30 7:22pm
    My daughter has ornithine transcarbamalyse deficiency and is forty three years old, to my knowledge she is the oldest recipient with this disease, and we are having a bit of a problem with elevated... more
    • anonyymous — marta, Sun May 31 9:53am
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