Re: finally getting listed
Sat May 4, 2013 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.


  • finally getting listedKaren Worley, Wed May 1 8:48am
    HI, Well after being pretty much a voyeur for the past maybe 12 years we are finally taking the step. I've been raising our 14 1/2 yr old granddaughter since she was almost 2 months old. When she was ... more
    • Re: finally getting listedJoe Marquez, Thu Jun 13 10:37pm
      Karen, I meant to respond to this news a long long time ago. Hate to read that things have been a nightmare for the past two years. Praying that when Destiney gets her new liver it brings much... more
    • getting listedeileen, Mon May 20 11:50am
      Karen and Destiney, Good luck and our thoughts are with you! My son Jared was transplanted just before age 1, and he turned 16 this month! He's a sophomore in high school :) You really bring back the ... more
    • Re: finally getting listed — Anonymous, Sat May 4 6:41am
      • for nadiamarta, Wed May 15 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... more
        • 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
    • for karenmarta, Thu May 2 9:12am
      hi karen, thanks for sharing your story. i am allmost 44 year old women with citrullinemia. i am the oldest living with this disorder. my citrullinemia was under control until two years ago when i... more
      • MartaKaren Worley, Thu May 2 10:53am
        Thanks Marta! You & I had connected about 11 years ago or so when I first talked with Joe online. Destiney also has citrullinemia, don't know if I said that in the previous message. I can't imagine... more
Click here to receive daily updates