I Received my (1st.) Liver Transplant 02.November 2014
At that time I struggled in first few days with reperfusion, seemed to get over this by day 7 and upwards since then.
Had 3 bile stents fitted and last one in for 6 months,which was removed 2 months ago, I thought all was looking good (fell very well, if a littled fatigued in the afternoons) the following lines are a direct copy of someone elses post of months ago!!
Got my MRI (MRCP) result today and it was not good.
I have blocked bile ducts again. A meeting will take place to see how they will be dealt with. Operations and stents seem to be out of the question. At this moment in time another transplant seems to be a step nearer. Looking at it another way at least the liver I have has not been rejected.
The journey continues! no one ever said this was going to be a cake walk, and here I run into some deep issues..... Ischemic Cholagiopathy is not uncommon, (not like PBC) but like PBC there is no cure, the upper (narrower) bile ducts are not getting enough blood (o2) and start to die off, this in turn can and often does lead to absesses, these can and do cause infection risk, so either due to infection or failed bile ducts my new liver is doomed, the only way forward is a second transplant.
I am new to this situation, others must have been there (here) before me. Interested in hearing from them, hooking up with them, so any fellow sufferers please post / message !
Staying positive, fear of consequences dealt with first time round, but as reality sinks in I am hungry for information, keen to share experiences, and live each day with meaning.
I suffered H.E. really badly last time, in fact so badly I am attending a DeLiver health conference next week in Brussles to describe my experiences of HE from the patients perspective.
Anyone struggling with HE please contact me if they want to talk about it (that is sufferers and just as importantly family and friends!!)
Will keep you updated......
Good fortune to all of us who struggle in the area of bad livers!