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Eileen (Jared's mom)
Dr Reyes
Sun Nov 7, 2010 7:27am
173.188.2.23

My son was transplanted in Pittsburgh, when Dr Jorge Reyes was the transplant director (before he went to Washington) - he had Jared on the 'list' before we even agreed to transplant. When we were ready, he listed Jared high due to a recent episode, and the transplant happened in 5 weeks. We now have Dr George Mazariegos in Pgh and he also feels strongly about transplanting UCD kids.
We certainly never had to justify the need for TX.
We were surprised at the anti-TX feedback we got from some MDs in other cities.
I even had one of the NUCDF advisory MDs tell me on the phone that statistically Jared would not make it to 5 years of age without TX. But at the NUCDF mtgs he was not so openly supportive, maybe because TX can go badly in some cases and he didn't want the responsibility of making that decision for families.
Good luck to you.

Jared had CPS by the way. We have had 12 beautiful years since TX.

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  • No answers!!Kelly Corby, Tue Oct 26 6:26pm
    My daughter is 10yr old and she has started to experience high ammonia levels after all these years! I have been thinking about a liver transplant for Alysa but think her drs at Chop aren't gonna... more
    • Re: No answers!!Amy Hillis, Thu Oct 28 6:47am
      Kelly, So sorry to hear about Alysa's troubles. Cincinnati Childrens is also an advocate for liver transplants for UCD kids. I think Joe is right, gather your information and present it to the... more
    • Re: No answers!!Joe Marquez, Wed Oct 27 9:45am
      Kelly, That sounds like some very close calls. When I had to make my case to the doctor's for Justin's transplant I put together a timeline of "incidents" showing that diet/medicine were not... more
      • Dr Reyes — Eileen (Jared's mom), Sun Nov 7 7:27am
        • Re: Dr ReyesJoe M., Mon Nov 8 9:01am
          I am very thankful to the foundation for all the information they've give us, support during crisis and work they have done for early diagnosis and research for a non-transplant related cure. That... more
          • JoeEileen, Mon Nov 8 1:03pm
            Joe, 'trying to understand other perspectives' is my constant struggle, whether it be medical, political, or who makes the best chocolate :) Keep up the good work. And I agree, the NUCDF gave me my... more
            • Re: JoeJoe M., Wed Nov 10 10:04am
              Eileen, LOL! I hear ya. NUCDF was there to show us that a g-tube was a path to sanity and that our metabolic team wasn't always up on the latest protocols during Justin's first two years. But they... more
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