Hepatic problems - UK resident

Hi.
i am a UK resident and have read with great interest the post transplant comments.

My history is that i used to drink a lot which resulted in an incident in may 2008 with me coughing a lot of blood like coffee grounds. I was hospitalised for four weeks. Subsequently I was treated with banding and a variety of medication. I had endoscopies every few months and was discharged. I did not fully recover and asked for a referral from my general practitioner to the hospital liver team. More endoscopy. In February of this year I had a major internal bleed shortly after an endoscopy. The local intensive care unit stopped the bleeding (one doctor told my wife that i had lost more blood the i had) and induced a coma. I was moved to a specialist unit where i had a transjugular intrahepatic portosystemic shunt (TIPS) procedure.and then moved back to my local hospital.

I know my wife loves me because she was asked for authority to turn off the life support machine which she refused to give, she can be very persuasive. I was in an induced coma for four weeks Initially i had HE to the point where i could not remember my children or wife.

The specialist stopped all my original medication and replaced them with Lactulose and Rifaximin together with an antibiotic. This is keeping the HE at bay and my digestion regular. My liver score is now at the best end of the scale.

I made a steady recovery and was discharged after a further four weeks from my local hospital, I felt that being at home was what i wanted one way or another. All my friends and family rallied round and the hospital service provided caring assistance.

I have not touched alcohol in any form since 1988. My wife is fastidious in the control of my (salt free) diet and looks after me to the point where i sometimes fell like a child - perhaps that is what I need.

I am recovering slowly and have now got my appetite back (most of the time) and can feel my strength returning slowly. I have started to exercise my neural pathways and dexterity by learning guitar, digital photography- mostly outdoors and getting involved in local societies. I am nowhere near as fast as i used to be but i am 64.

The hospital treatment I received was second to none and the specialists keep a watching brief to be on the safe side. Doctors tell me that normally no-one walks away from what happened to me but i am still going strong. I am on the high risk list with my GP

I am acutely interested in what the future holds and in particular what i or my family can watch for by way of bad signs.

I do not know whether a transplant is advisable or whether any risks outweigh the benefits. There is, in effect, a practical upper limit to the age at which transplants are offered in the UK and i am not far off this.

So far the specialists have not mentioned this option. Does this mean I do not need one or am I too far gone? Only they can tell me. My next appointment is in January 2013 so i might pluck up the courage to ask. (Do i want to know the answer?)

Thanks in advance to anyone who might feel able to offer any comments or practical advice.

Sorry to go on but it is rare to find anyone who can relate to the condition. Thanks to the providers of this site. It is very useful to be able to unburden . I hope i have not been too self indulgent.

All the best
PCB

Hi there

Connie is far more knowledgeable than me on the medical front but I too am in UK and understand the system here a bit. I am sure your liver doc will be happy to discuss with you whether he/she thinks you may need a transplant in the future - and whether you would be a good candidate or not.

As you probably know liver transplants are carried out in a small number of hospitals here (7 from memory) but all heps will be used to working closely with their nearest centre and referring people where necessary. Are you under the care of somewhere that does transplants do you know? The national guidelines and protocols used for selection are available online (at least I found some from 2009 so my guess is they still apply). The British Liver Trust website has lots of information as well. There isn't an age limit as such but because of the shortage of donor organs (ironically our low death rates on the road has a downside in this respect) I think the selection criteria are tighter than in some other countries. I guess the criterion that you need to have a 50% probability of surviving 5 years does mean that there is a practical upper age limit - although they will assess this on a case by case basis.

But hopefully you will never need one and this is all information to be filed away.

Ann

Post Edited (AIHer) : 10/26/2012 2:29:08 PM (GMT-6)

They don't do transplants at Nottingham so the nearest liver transplant centre to you will be Leeds, Birmingham or Cambridge I guess. But your hep will have the info you need.

Ann

Post Edited (AIHer) : 10/26/2012 3:25:22 PM (GMT-6)