getting listed
Mon May 20, 2013 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 memories talking about the overnight bag in the trunk! I wrote a short story about that once but never did anything with it. And the brittle hair breaking off! Jared had CPS but he also lived with the brittle hair for a year. No bangs in any baby photos.
I have to say that you are smart and brave making the decision to delay transplant years ago. Us parents/grandparents really have to go with our gut once we get all of the information that we can. It sounds like you now got 'the sign' that it's time. We got ours much earlier on, but we did delay for 10 months trying out medical management first. Best of luck to you. We waited 5 weeks for the call, but we were told that it might be 5 months, and Jared was listed very high after a hyperammonemic episode.
Keep us posted, stay cool!

  • 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 listed — eileen, Mon May 20 11:50am
    • 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 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
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