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.
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
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
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
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