We saw the Consultant who said he wants to try an ERCP to stent and also clear bile debris. This won't solve the deep bile problem but will give some relief of these awful symptoms... hopefully.
They are now saying they want to try all avenues before re listing...
Another thing they will try if this doesn't work is a bile reconstruction surgery...
Not sure where all this will lead so if anyone has any experience of the above then please let us know of your experiences...
Pear
Hi do you mean bile duct reconstruction. Is it the main bile duct which joins on to the liver that you are talking about being reconstructed?
Hello,
Well, the MRI showed that this part was ok - which I raised with the Coordinator who said they could reconstruct some of the damaged bile deep inside the liver? Or she could be talking about the ones that have strictures...
Ive asked to see someone who can tell us what is the plan and also it would be nice to have someone responsible for his care...
Pear
I follow your post with interest as I have the same problem, just don"t know how bad it is..
Dear Brummi,
He had his ercp today and they managed to do some, very little clearing of the debris as the outside main ducts were not in any stress mode however they confirmed that the biliary tree is in a really bad shape. I am going to see if I can see a surgeon with him to see about this reconstruction surgery... will keep you posted
Pear
Hi Pear-shaped, I have only just now seen your posts, I bet you have heard the mantra I have heard so many times, each individual has his own journey post liver transplant! I had mine Nov 2014 - we talked about H.E. previously..... - My story sounds not completley different to yours, on day 5 I was on nil by mouth and about to be emergency listed for a new (second) transplant, on day 6 I started to show signs of recovery and by day 8 I was starting to look good. (that was scarey) following this I have had 2 bile duct stents, one plastic, then 2 months later replaced with a metal one, the second stent has stared to work (we think) and some of my blood readings are starting (fingers crossed they continue) to fall.
I just noticed Brummi has responded, I understand this problem is far from uncommon, and with that wish you strength to keep hope up high on your agenda along with asking pertinent questions, which will empower you to help ensure everything that can be done is being done.... it really is a roller coaster of a ride -as you surley know- please keep sharing with us, it helps us all, we who understand the highs and lows, I wish you and hubby more highs in the near future, you deserve them.
My Dearest PC,
I honestly feel that I would be in a much more darker place had I not had all the support I have had from the people from this site... I am trying to stay positive as I honestly feel this - as scary as it is - is the right thing for him..
I do hope that you keep making good progress, it does take time...
Yours truly,
Pear
Not sure what to think
Not sure if this is liver or gallstones...
What is the way forward?
Awful symptoms, not sure if liver related.
Which treatment to choose for hep B
