Ischemic Cholangiopathy 2nd. Transplant coming up ?

[PCBnPBC]

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!

Charlie.

[Calogia]

Charlie - you are such an inspiration! Thank you so much for sharing. So many people worry about their enzyme levels and to have someone share what you did makes me feel small.

Please keep posting and keep up that incredible attitude!

Thinking of you.

Calogia

[PCBnPBC in reply to Calogia]

Thank you Calogia, of course sharing blood and enzyme levels is helpful for both the poster and reader, we all suffer together here, and we all help each other even if we are primarily concerned for our selves, which is a very natural position to adopt! people deal with issues in different ways (each journey and reaction to journey is individual!!)

I feel guilty (not so guilty I am struggling) that my wife and children have to suffer my condition, the H.E. threw an extra component of suffering for them all, and now its here we go again..... we only just got over the first round!

All I can do is to try to remain as positive as I can, my way of dealing with it is to laugh at it, take it as it comes, remember it is my life journey, and as I have said before, remember 99% of the worlds population would swap places with me given the chance, so I am not in that bad a place. (just yet!)

Charlie.

[Calogia in reply to PCBnPBC]

You are absolutley right Charlie. I just want to keep laughing, enjoy life and take everything as it comes. Hearing a children giggle or watching sunsets...the beautiful things in life are whats important.

Keep up the great attitude!

C.

[Karaliz]

Ditto to Calogia's statement !

Very best of luck to you Charlie

[ranrace]

My thoughts and prayers are with you my pbc brother from thousands of miles away!