I am very sorry to hear this. My sincerest condolences to you and your family. FCH is a horrible thing that is extremely infrequent but unfortunately does not have many treatment options. We are trying to study this and hopefully one day will have some answers. my sympathies again.
I wanted you to know that Don died Feb 18th very peacefully. It was a valiant effort from all concerned but i guess was not meant to be...I feel comfortable in that we got palliative care involved so he was peaceful and unrestrained...I promised that. I can't say enough about the transplant program at Vanderbilt, unfortunately I guess he fell into the small percentage of people that develop FCH. I hope everyone will please fill out a donor card know that I have. You are truly a wonderful man to do this forum and I got insight and guidance from your input
thanks. i hope he gets through this
Thank You so much for taking time to do this forum,and your knowledge,compassion and honesty.
I am very sorry to hear this. he might be infected so a course of empiric antibiotics might be indicated. in addition he should be treated with xifaxan for encephalopathy. recurrent HCV can be severe in the absence of an elevated AP. i think that overall we are trying to get him through this acute decompensation only. Without retransplantation it unfortunately does not sound good long-term. Sorry
I just wanted to add that this man was a brilliant man who speaks 3 languages. He is lying in bed, babbling and pulling on lines and NGtube and he is in restraints... all of which he would be furious about.and I promised not to permit..Would it be unreasonable to ask for comfort measures only or am I being premature?
FHC possible w/o elevation of alk phos? It sure seems like that's what it is to me...now he has VRE on top of everything else...I want to give him every chance but when do I know when it is truly terminal and enough is enough?...he is a DNR but as his HC proxy I know he would not want continued treatment to prolong the inevitable...eg dialysis etc
this can definitely be FCH. unfortunately I think retransplantation may be the only option
He is back in the hospital, bili 30, admitting glucose 29!, WBC 14(from 8only 4 days earlier. US shows decreased flow to hepatic artery, ascites,severe jaundice and early renal failure, BUN 45, Creat 3 After several amps of D50 and infusion of D51/2 sugars still low, this am 49. Still very confused, liver enzymes(got,gpt )150ish, alk phos normal..could this be FCH? Cultures of blood and ascites fluid pending..no fever or tachycardia, b/p ok. HELP! what could be going on?
he should also have an MRCP. Unfortunately retransplantation does not carry appreciable success although it can happen if patients are able to be retransplanted when there MELD scores are not too high.
Ultrasounds show patency and gd blood flow, he has had 2 biopsies. We are restarting laculose but this am he is very confused and I think hallucinating sometimes...it is so sad and I wish I knew what to do but I am afraid it has been done. I know Vanderbilt will not retransplant...
they should be be 100% sure that what is going on is only HCV and there is no concurrent bile duct problem or rejection. sometimes liver biopsies need to be repeated frequently and an imaging study of the liver should also be checked. Right now the only medical Rx of recurrent HCV is interferon and ribavirin unfortunately.