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for afton
Thu Jan 15, 2015 14:23

Afton; happy new years to you too. Sorry for your loss. I was born with citrullinemia but not dignosed at 3 months cause of no newborn screening. I lived with citrullinemia for 44 year until for 2 and half years i was so very sick and did not know life outside my front door exsisted. I went to the hospital every 6 days with high ammonia not super high but high. I was not stable. I was to the point where 10 grams of protien sent me to the hospital.Dr said there was no more they could do for me so i was transplanted june 7 213 so they saved me before i died like two 20 year old with citullinemia of liver faluier wating for a liver.dr' with me were in a hurry to get my old liver out and it ends up it was in bad shape it had many things wrong with it but one of the things was cirossis. After they found out what was wrong with my liver i gave it up to medical science i think they call it. If you dont mind my asking what caused your son to die? Was he waiting for a is hard going from a low protien diet 44 years to a high protien diet.marta

  • Just wanted to say hi to you all and send positive healthy thoughts to you and your families! Randall's 7th birthday has just passed- hard to believe it's been 7 years since we met our special little ... more
    • for afton — marta, Thu Jan 15 14:23
      • Hi Marta! Afton, Thu Jan 15 16:03
        Hi Marta, Yes I've been following your story on here for the past 7 years! So glad to hear your transplant has been successful! We are so happy for you!! Randall died at 5 days old- there is no... more
        • for afton marta, Fri Jan 16 11:54
          afton, that has to be so hard no newborn screening when I was born ehtier. dr's did not know why I was so sick. it was my parents determation to keep me alive. I was thowing up all my mom's breast... more
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