for nadia
Wed May 15, 2013 3:40pm

hi nadia, i am a allmost 44 year old women born with citrullinemia and i am listed for a transplant. i am getting transplanted at oregon universty hospital. where are you from? why are you transplanting your daughter? how old is your daughter. i am orginaly from italy but live in orgon stafford in palo alto california does very good with transplants on kids cause that is there speacilty in fact children with citrullinemia who want to be transplanted get sent there because dorbecker children's hospital does not do transplants on kids just adults. marta

  • Re: finally getting listedAnonymous, Sat May 4 6:41am
    Which center you are following with? My baby girl has citrullenemia and we want her to be transplanted as well, but don't know which centers are good in this. Nadia
    • for nadia — marta, Wed May 15 3:40pm
      • Re: for nadiaNadia, Wed May 15 10:30pm
        I am currently in New York, but planning to move to Texas. and my baby is 3 months old, we are from Pakistan. I want her to be transplanted because we are scared of hyperammonemia episode.
        • for nadiamarta, Sat May 18 9:53am
          nadia, has your child had a an eppisode of high ammonia since her dignoses?marta
          • Re: for nadiaAnonymous, Sun May 19 4:57pm
            Not episode, but her ammonia is staying high
            • for nadiamarta, Mon May 20 7:18pm
              nadia, so has she been hospitalized for her high ammonia? i go into the hosptial once to three times a month with high ammonia. i get tube feeds at night while i sleep of duocal, argenine, soduim... more
              • Re: for nadiaAnonymous, Mon May 20 10:32pm
                Thank you very much Marta. Good luck for everything. Nadia
    • glad your listedmarta, Wed May 8 9:20am
      i am listed at ohsu university hospit;al in portland oregon. it is the only place i can be listed because it is the only place insurance will pay. i have been listed since october 3rd of last year.
    • Tx CenterKaren Worley, Sat May 4 7:59am
      Hi Nadia, We are in Florida and are going to Shands Children's Hospital @UF. Karen
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