Hi, my 41yo brother has currently been in hospital for nearly 6 weeks since he developed jaundice over Christmas. He had an emergency liver transplant in May 2016 after getting a blood clot in his liver, which I understand is extremely rare. His liver completely stopped working just like that, and he received a transplant 24 hours after being approved due to the severity of his condition. He has never suffered from liver problems previously.
He is suffering from severe jaundice and ascites, and they have tried to drain the bile duct without any success. He is very weak at the moment and is being fed through a tube. He can no longer get out of bed.
The doctors have been unable to find anything wrong with the transplanted liver after 6 weeks of tests. Structurally it appears fine, and there is no sign of damage. The results only show that bilirubin levels are extremely high in the liver.
They have said that they are going to assess him for re-transplantation, though we are naturally worried about this being denied due to the unknown cause of his condition.
Also, we don't know how long he can remain in his current condition without a transplant. From reading some posts on here it seems people can live with end stage liver disease for some time, though the doctors have shyed away from answering me when I've questioned them about how long he can realistically carry on without a transplant.
It's very hard to see him suffering and not knowing whether he will be able to survive this. My mum is taking it especially hard.
It would be good to hear from anyone who has had or faces the prospect of retransplantation, or anyone who is suffering from end stage liver disease so that I can understand what to expect with my brother.
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Edbergius
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I am so sorry to hear how your brother is suffering and you and your family are having to go through this terrible ordeal.
My husband had his first transplant and within a year he had to have another one as his new liver was dying and he was dying with it. He had ischemic cholangepathy. Which means all the structures are dying bit by bit. He also had a terrible bout of CMV virus which was just before the liver becoming very sick.
Something is definitely wrong and they need to see what it is before they transplant again. Have they done an MARCP? Or a biopsy?
The bilirubin being so high is telling that there is definitely something wrong with the liver.
Ask for answers - go back to the coordinators and ask them to explain.
You need to demand to see the head consultant and have your questions ready.
Please keep us updated.
Wishing you and your family strength at this difficult time.
Thank you for your message. It is comforting to know that another transplant is a possibility and that they won't automatically refuse one. Was the post-op period different to the first transplant?
The CMV virus that you mentioned your husband had prior to the liver becoming sick has reminded me that my brother had some kind of virus a few weeks prior to first noticing his jaundice. We assumed it was the flu or similar, but I'm wondering whether it was this illness that brought on this condition.
I have spoken to the head consultant and they have confirmed they are unable to determine what is wrong. They have done many tests over the last few weeks, including several biopsies, endoscopies, MRI and a PET scan and none have provided an answer. The liver looks to be structurally sound and there isn't a blockage of the bile duct causing the jaundice. As a last resort they are testing the DNA of the donor to see whether there is anything genetically that could give rise to this condition.
I have just spoken to the hospital and they are doing a procedure on his heart today. His heart rate keeps dropping very low whenever he is sitting up., although has quickly become normal once lying down.
Most are carriers of CMV - it's only a problem when organs from a carrier are transplanted - triggers the virus - which is a very nasty bout of sickness - flu like and totally drained out. It is worth asking about - however I do think that they need to look at a biopsy to see what is really happening.
My husband was extremely sick and even got pancreatitis... So I can totally understand what you must be going through...
Dear Edbergius, I'm so sorry to hear your brother is so poorly again. My husband suffered with a blood clot in his, liver in 2016 and was diagnosed with Budd chiari. My husband had the Tips procedure (stent put into the vein in his liver) this helped although he now has hepatic encephalopathy and obviously his liver was damaged by the clot. From this, kings hospital investigated further and found the cause of his clot was an auto immune condition called antiphospholipid syndrome or APS or "sticky blood" (also used to be called Hughes syndrome) my husband now has to take warfarin for life. We have to have appointments with his liver consultant every 3 months. As his wife it's so hard to see how much he suffers not just with the symptoms from the liver and clotting syndrome but also the depression that has now come along.
Although my husband isn't in the same situation as your brother, I wanted to let you know what we found the cause of the clot was in case this information helps.
I really hope you get answers soon and that they find the cause of your brother's liver failure and know how to treat it. Sending you my thoughts at this really difficult and stressful time xx
Thank you for your reply. My brother too was diagnosed with Budd chiari when he was admitted to Kings in 2016. The blood clot in his liver was too large to remove using a stent and had completely blocked the vein, which is why he required an immediate transplant.
It seems as though he suffers the same condition as your husband, as they found two more blood clots in his body after he had received the transplant. He has been given blood thinners ever since which has prevented any further blood clots.
Sending best wishes to you and your husband. I suffer from depression myself and know how hard this can be on top of his liver issues. I can certainly recommend counselling to help with this if he isn't receiving some already.
one of the people I met in hospital having my transplant has had his re done... he was okay for a little while after his first op but went down hill... had kidney failure and other problems so was in hospital for several months. he was also on a feed tube. a few weeks after that he was put back on the transplant list... and quite quickly got his next liver. he was a bit longer in hospital afterwards and was on tube feed afterwards but is now home.....
he was very poorly and lost so much weight but is now doing really well.
i know every one is different.. but thought you would like to hear a success story.
your brother hopefully will go on the transplant list soon and he will be near the top due to how poorly he is..
try to get him to eat as this is important for the op.. just a few mouthfuls extra of some protein high caloriefood as often as possible will help him.
concentrate on what you can do to help rather than what you can't. the consultant probably can't give you those answers.... as basically its... how long is a piece of string....
take little bits and pieces in he might be able to eat... and be cheerful and upbeat when you visit... try and keep his spirits up... i know that sounds impossible but if you are positive it will help his mood.
i know this doesn't fix his liverbut this will all help him to approach another transplant well.
these are the things that helped me after my op.... and since. get your mum cooking for him if she's able....
my husband was bringing in prawn sandwiches as i couldn't face a lot of the hospital food ha ha
It is comforting to know that someone else has had to go through the process of re-transplantation and is now doing really well.
I agree with the idea of getting him to eat, even if it is just a few mouthfuls. He has a bile drain in his throat at the moment, which he says makes it difficult to swallow but I will try and explain that every small mouthful is one step closer to getting better. If he has to have another transplant then it is important that he is as strong as possible for the procedure.
I certainly will try to be upbeat and encouraging for him when I visit. It must be very scary for him and being positive when talking to him will I am sure take away some of the anxiety he is feeling.
Thank you for your wishes, and trust that your transplant has been a complete success.
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