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marta
for karen
Thu May 2, 2013 9:12am
98.246.41.177

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 satrted to go in and out of the hospital, i was in more then out. i go to the hospital anywhere from once a month to three times a month with high ammonia even though it is well controlled with diet and nightly ifusions by pump through my feeding tube. i live in oregon and i was listeed on october 3rd of last year and i am still waiting for a liver. i hope your grandaughter gets the call soon. medicine for my citrullinemia only seem to work for a little bit then i have to be hospitalized. i live alone with my pets and my parents are with me everyday overlooking diet and medicine. keep us posted about your grandaughter. hope she gets a liver soon. marta

  • 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 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 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 karen — marta, Thu May 2 9:12am
      • 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
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