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Pete
OTC
Wed Apr 24, 2013 6:16pm
72.19.131.161

Hi, I have two daughters that were transplanted for CPS. We had reached a point where the UREA Cycle medications were not working and the transplant was the best option. One daughter was trasnplanted at 1 year old the other at 18 months. The first transplanet had lots of complication initially and she was in the hospital for 60 days after the transplant. Since then she has only spent two or three days overnight at the hospital. The other daughter came home 6 days after her transplant and we've not had any complications specific to the transplant. She has had issues with PTLD (Post-Transplant Lymphoproliferative Disease) which has led to a couple of forms of Lymphoma. Hoepfully we are now past the PTLD complication as she has not spent a night at the hospital in almost two years.

Take your time and do research. This is a big decision, but for my family it was the nest thing we could do for the girls. They are fully active in school and will complete the 8th grade this year. One has a mild reading delay from the CPS, but other than that they are completely like all the other kids in thier school.

  • OTCAnonymous, Mon Apr 22 2:48pm
    Hi, my little girl is 5yrs old and has OTC. The doctors have told me that I need to consider a liver transplant. If anyone can give me any advice or help I would greatly appreciaite it.
    • OTC — Pete, Wed Apr 24 6:16pm
    • Re: OTCAnonymous, Wed Apr 24 4:18am
      Hello there My daughter was born with OTC and had a liver transplant in 2009 aged 6. The first year I regretted making the decision due to all the complications she had. Now, you would never know she ... more
    • for anonymousmarta, Tue Apr 23 9:09am
      hi there, i am allmost 44 yeaars old and i on the liver transplant list cause i am in the hosspital more then out with high ammonia due to my citrullimia. i got listed on octber the 3rd of last year... more
    • Re: OTCAnonymous, Tue Apr 23 8:42am
      My son had citrullinemia, he was transplanted at 20 months. In my experience dealing with the transplant was much easier than dealing with the urea cycle disorder. He is 3-1/2 now and doing great.... more
      • citrulllinemiamarta, Tue Apr 23 9:17am
        hi there i was wondering if you would transplant again if you had to? i have citrullinemia and i have been on the list since october 3rd of last year. i am uncertain as an adult wheather or not i... more
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