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Elevated ammonia levels

Digestive Health | Last Active: Feb 25 1:06pm | Replies (48)

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Thank you @contentandwell. I remember you posting not long ago about your extreme dislike of lactulose:-( I'm glad you mentioned xifaxan. That was the other medication my son's doctor told us about. She did say that would be her first choice to treat HE if needed. Congratulations on a successful liver transplant! My son is stage 4 cirrhosis. He completed his evaluation for transplant a little over a week ago. Not sure if & when he'll be put on the list as is the case with PSC patients his MELD fluctuates.

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Replies to "Thank you @contentandwell. I remember you posting not long ago about your extreme dislike of lactulose:-(..."

@stella1 It must be a huge relief to you and to him that he is now a candidate for transplant. What is his MELD now? I think when they put me on the list I was at 18. I was at 11 when I first went to the hepatologist but it quickly went up. I was on the list for about 16 months, maybe a little less.
My hospital is in Region 1 and I was told right up-front that other regions may be able to offer a transplant at a lower MELD. I was ready to list at Mayo, I had spoken to them and they felt they would be transplanting me at MELD 28, but my hospital (Massachusetts General) came through when I was at 28. At that time they were usually transplanting at MELDs in the low 30s. I think being blood type B helped.
I sincerely hope your son never has to deal with HE. Not everyone does. Even though I went a long time without an episode, I woke up every morning praying that I would get through the day without one. It was actually HE episodes that caused my doctors to diagnose cirrhosis. It took them almost a year and a half, but they weren't putting all my symptoms together very well. I know now to not stick around here with no diagnosis, to head right to Boston. What led your son's doctor to diagnose cirrhosis? It sounds as if he was pretty lucky for it to have been diagnosed.