Guest guest Posted April 28, 2007 Report Share Posted April 28, 2007 I have not been involved with this list for many months as my 16 year son was diagnosed last February with PSC with a cirrhotic liver. He has only 3-5% reserve left. He has had 2 bouts of bile duct infections that required picc lines for antibiotics. Currently he is having issues with malabsorbtion. In spite of thse problems his MELD score is only 16 and we have not been successful in attempts to get it increased. We live in Northern CA and Region 5 is very competitive. Therefore I am seriously thinking of taking him up to Seattle Children's Hospital and/or Nebraska Medical Center to get evaluated for their lists as they are in other regions. It has seemed like a no win situation. If I manage his disease so that he can have some quality of life, he doesn't get worse, if he doesn't get worse he can't get better. Has anyone had experience listing in other regions?? And specifically the above mention centers??? Thank you, Rita Quote Link to comment Share on other sites More sharing options...
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