How long after kasai to get normal bilirubin? Or decide that need transplant? + why

[4rie]

Hit me up with your story please. For those with successful kasai, how long is it unit you get normal bilirubin? And for those with transplant how long after kasai do they decide that transplant is necessary? And what make them decide?

[Widemoon]

Hi, our daughter had successful Kasai last year with normal bilirubin (not the rest of LFTs). We were told that based on that she was unlikely going to need a transplant for at least two years. Unfortunately though, she kept having cholangitis and we couldn't get rid of it, resulting on us spending months at the hospital for iv treatment. As a result of the constant infection, the liver deteriorated and she was put on the transplant list following a week assessment. There are guidelines that docs follow to decide whether a child needs to be on the list or not; it is mainly about bloods but it's also about weight gain issues, infections/cholangitis and other things; following a kasai I think they tend to wait six months before they say that it has been unsuccessful. If they agree the kasai was not successful then I'd think they would start keeping a close eye on weight and bloods and eventually list the child; the aim is to list them before things deteriorate, but also they need to be in a good place weight wise before they can go through the surgery and if they can correct this before listing they will try and do that.

So I guess our story is a little different, our kasai was successful and bilirubin dropped very soon after kasai and was absolutely normal for weeks/months; the reason for our transplant was related to persistent infection. Every case though is so different, and their decisions vary based on the clinical picture at the time; ask them all the questions you have, they might not have straight answers for everything but it will clear things a little!

[Lois-Cldf Partner]

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