ukeld

[Meanies]

I got my ukeld score today and it’s 57 I have decomponsated liver disease stage 4?

what will this score mean for me? My partner was ment to come with me today although we got in an argument and I had to attend alone.

[AyrshireK]

They will look at your UKELD score in conjunction with all the other tests you have during assessment. Obviously you need to be poorly enough but also fit enough and no one score quarantees listing. A UKELD of 49 used to be the minimum required for listing but nowadays they also refer to the Transplant Benefit Score. britishlivertrust.org.uk/ne...

Lung, heart health, anaesthetics, other health issues and more are all thoroughly investigated.

They will also be looking at your support network as you will find this journey nigh on impossible with people to give care and support.

Best wishes, Katie

[RugbyMama]

Liver disease stage 4 means cirrhosis, basically meaning that your liver damaged beyond the point of being able to heal itself. Some people can ha e this but the liver is still able to do most of its' normal functions (this would be compensated).Decompensated means that your liver cannot perform its' normal functions and you have some form of other symptom because of this. Might be ascites (fluid build up usually in your abdomen or legs), varices, hepatic encephalopathy, jaundice etc. Essentially it means that your health is at risk and they may begin transplant assessment.

At transplant assessment they will look at your overall physical and mental health, any use of medications, drugs or alcohol (if alcohol is an issue for you), and your support network both before and after any surgery. A solid support network is absolutely crucial for working through liver disease but also before, during and after any surgery. Do you have more support around you than just your partner?

[Meanies in reply to RugbyMama]

I’m at the end of assessment for transplant so not sure if I will get on the list. I have my family which are good support also. My physical and mental health is fantastic, I have not drank from September 2022 were yes I ill and had fluid and lost a lot of blood., my levels were over 500 for bilirubin according to the letter. It’s not 57.

[Meanies in reply to RugbyMama]

My bilirubin is 45 today

[lonmallin50]

mine was 60 when they put me forward for transplant in 2 months it was 69 at my assessment for transplant got my liver only 5 months later

[Meanies in reply to lonmallin50]

Oh wow ok , all of my other appointments for the assessment for transplant have all been good so I’m not sure what they will do with me. Had my last appointments yesterday