Just given a diagnosis of chronic rejection, and I was told that people can live a long time with chronic rejection. Transplant was 6 months ago for FHF due to accidental drug toxicity. Current symptoms are jaundice, fatigue, vomiting, continuing weight loss. On 4 different immunosuppressants currently, and a whole host of other meds. Labs reveal elev alk phos, ggt (both over 1300), mildly elevated ast, alt, cong bili. Also cont renal failure and traumatic brain injury that resulted from FHF. Any data, papers, etc regarding what the future holds regarding chronic rejection? Average on what the future is? I don't know what the doctor meant by long time, and desperately looking for some answers. Any history of patients given this diagnosis considering stopping immunosuppression? Quality of life? I am pretty sure the question of re-transplantation is not an option based on current health. Thanks for your response.
people can live a lifetime with chronic rejection, especially if their bilirubin level is not elevated too much. The treatment of chornic rejection is by increasing immunosuppression so one must be careful to avoid the complications of this. I would definitely not try to decrease the rejections meds or stop them. I would ask the team to make sure you do not have a plasma-cell hepatitis on the liver biopsy. retransplantation can always be an option but one that should be avoided at all costs.
Thank you very much for the prompt response. I am not sure how much more immunosuppression he can take. Current regimen includes 5.5mg Prograf bid, Rapamune 3 mg daily, 15 mg prednisone, Cellcept 500 mg qid. The nausea and vomiting has been very hard for him to deal with, and my guess is that increasing the immunosuppression will only worsen those symptoms.
The most recent ERCP done last week showed a 6mm discrepancy between the donor and recipient bile ducts with an impression of primary vs secondary sclerosing cholangitis. All lab trends are headed in the wrong direction, and balloning of ducts was of no benefit (ggt rose another 100 in 2 weeks).
I see you have done a paper on plasma-cell hepatitis, but I do not see any free access via pubmed - nor do I see an abstract. I will try to find the publication in the library, so that I can educate myself on this.
He was not sick a day before this FHF, so recurrent disease is not an issue. I should note that the liver was ABO incompatible (AB to O).
Thanks again for helping - It is comforting to hear another opinion.
i think that he is on way too much immunosuppression. if there is documented chronic rejection than cellcept and prednisone may not be necessary. ABO incompatible mismatches are well known to cause biliary stricturing and bile duct problems. sometimes these bile duct problems can be extremely difficult to differentiate from chronic rejection on a liver biopsy and in fact both could be present at the same time.
Thank you - Again!
The thought is that it is bile duct issue with chronic rejection. The current plan is to slow down on the prednisone and wait and see. I guess it is just the wait and see that I am anxious about. They had continued to increase immunosuppression due to multiple episodes of acute rejection - one of which required thymo, the other required steroid bolus. Both gave a mild temporary improvement, but labs returned to significantly abnormal after.
I can't seem to find any information regarding a "normal" path - although this has been anything but normal. Does this biliary stricture just continue to worsen until the liver fails? Is this a horrible drawn out process for him to go through? Although biliary numbers are very high, total bili and cong bili numbers were fine for a month, but now they continue to rise with each lab. Any studies you can think of regarding path we can expect regarding chronic rejection?
rule of thumb is that if bilirubin greater than 10 due to chronic rejection, it may not improve with medical treatment. Yours is a mixed picture however. The strictures from ABO incompatibility are often intrahepatic and diffuse so may not be fully treatable with stenting.
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