Is it possible that our husbands go to the same hospital? Barnes-Jewish is right on Kingshighway right off hwy 64 (i believe I170 now turns in to 64 highway). It is connected to Washington University of St Louis. Childrens Mercy is connected also. Huge place. The head of the transplant team is Jeffrey Crippin, my husband usually sees Dr Korenbalt but there are several others, they are all in what they call CENTER FOR ADVANCED MEDICINE. It also is not in a good area of town. We usually stay in Bridgeport which is about 15-30 min from the hospital. They put my husband on the list when his MELD score was 13 because he was blood type "B".
Something I wanted to add. We have been told on more then one occasion. If the sodium is low you get extra points on your MELD score for that, Everone should get that. YOu need to ask. There is something else you get extra point for but I can not remember what it is called. It has something to do with the lungs. Please check in to this I hope it will help.
St Louis put in a request to UNOS asking that his MELD score be increased, it was denied. I was told that Mortality rating is what they are looking at and that quality of life really doesn't play a role in adjusting his MELD score.
Mary, you are correct about the encephalopathy. My husband suffers from this now and they did state there was a possibility that would get worse. I am so sorry about the loss of your husband, I can not imagine how difficult that must be.