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 have also been there post-transplant. They were the catalyst for the longitudnal study that Justin is in that will assess the quality of life one gets from transplant - and when his transplant plumbing got clogged in 2007 and he developed hyperammonia from a TIPS shunt procedure (which happens regardless of whether you have a UCD) - they provided me a lot of support and guidance on how Justin's post-transplant argininosuccinate lyase deficiency might need to be dealt with in this situation (e.g., would he need arginine to get through it).
I just worry that the fears UCD parents have about transplant, while partially legitimate, are too excessive to match the reality of the art today.
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
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... 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