Listed

[LAJ123]

Almost exactly one year since becoming ill we had the news today from the transplant coordinator that following today's MDT meeting he is now listed for transplant. Now begins the hard part - the waiting for the phone call to come to the unit.

[grumps]

Great news.. hope the waits not to long his health holds up..

Our son had his first 1 day assesment at QEH last Monday and and is booked in for 23 & 24 March for his 2 day assesment.

They have a meeting on the Fri. 25th March and should, if accepted, be on the list that day....Good Friday....let's hope so

Thoughts with all going through this stressful situation

[retwos in reply to grumps]

Hi even though your son hopefully will be put up for transplant it takes a few weeks to become activated , it's not straight away , God luck with everything

[Hidden]

Great news. Task now is to keep as well as possible, stay positive and within 3 hours drive of your transplant centre.

[grumps in reply to Hidden]

Thanks Mike8702 we are 130 miles away from QEH. In Lytham St ANNES.. The M6 can be good or bad depending on day and time.

2 hours on a very good day. 4 / 5 hours on a very bad day

Fingers crossed

Grumps

[AyrshireK in reply to grumps]

You will probably find they will put plans in place to blue light ambulance your son to hospital if the call comes.

We live the opposite side of the country from our TP centre at Edinburgh and are over 2 hours drive away (which TP co-ordinators agreed wouldn't be a safe drive for me under the stressful circumstances of having 'got the call' - we were told that an ambulance would be sent to our home for hubby and worse case scenario in poor road conditions an air ambulance). So don't worry about traffic the co-ordinators will discuss logistics with you if your son gets listed.

[grumps in reply to AyrshireK]

Thank you for that information it all helps

[jojokarak]

Great news I also got listed 2 weeks ago so I know how he is feeling x

[dizzime]

Fantastic news I hope you don't have to wait too long. stay as fit as you can. I know it's hard in the circumstances but it helps to keep as asctive as you can. Good luck with everything. Stay strong and keep positive. x

[X19Dave]

Hi good for you my wife has just been put on the transplant list she has been ill for about three years.

Which hospital are you at

Dave

[LAJ123 in reply to X19Dave]

The Royal Free - and you?

[X19Dave in reply to LAJ123]

Addenbrookes they are very good looking after the wife very well

[LAJ123]

The Royal Free. Must have been very ill or lucky to be listed after just one year. In that year roughly 8 or nine admissions mainly with encephalopathy. couple of times feared he wasn't going to make it. The worst admission was with spontaneous bacterial peritonitis. UKELD score of 59 and Pugh score C2.

[ElspethG in reply to LAJ123]

How did they treat the encephalopathy? My brother's first attack was misdiagnosed as a brain stem stroke and he was put in a room at the end of a corridor to die. Fortunately, we had stayed with him and were able to get help when he started to come round but he was without medication (he'd just started a course of antibiotics for an infection) and nutrition for more than 24 hours.

[LAJ123]

The oedema, ascites and spontaneous bacterial peritonitis were all connected to the encephalopathy. The treatment was quite basic, a daily enema with large doses of lactulose to completely cleanse the bowels of toxin producing constipation. The liver is unable to remove these toxins from the blood stream so they cross the blood brain barrier causing the encephalopathy which can mimic all sorts of brain problems so misdiagnosis often happens if not seen by a liver specialist. The rest of the treatment is to continue when discharged, with the lactulose and to take daily doses of Rifaxamine, these prevent constipation and stops the normal bowel bacteria from producing the toxins. Its important to keep to this regime as the sufferer is often unaware that anything is wrong, so you need those who know them best to recognise when the encephalopathy is beginning to affect the brain and take them along to A & E where they can explain to the doctor the history. Hope this helps.

[LAJ123]

PS - on discharge they are sometimes prescribed a 'rescue pack' of antibiotics so they can. on noticing the subtle changes beginning, take in order to prevent it developing into a full blown attack. I have this plus enemas to ensure the toxins do not have the opportunity to cause another episode. I've now gone almost three months without a hospital admission - so it does work ! Hopefully between now and the transplant I wont have any further encephalopathy.

[Hidden]

Any luck yet !!!! I was put on the list last July 2015 waited only 18 hrs for the call very very lucky man, doing fine now , try and keep your body healthy and fit , I no it's hard but you must try to get through this operation good luck friend 🙏🙏🙏 Bob

[LAJ123 in reply to Hidden]

18 hours is amazing ! We thought two weeks was unbelievably quick.  Glad we both share the positive post transplant story