UKELD test question

[Robert1981]

Hi, is this a standard test as part of the 6 month cirrhosis check up?

I have just been diagnosed, and the level of information from the consultant was a 1 minute conversation which went ‘we know what’s wrong with you, it’s stage 3 liver disease, any questions’. Was out of the room in a minute.

Received an ultrasound appointment for 4 months (6 months from diagnosis), but no mention of anything else apart from routine doctor appointment.

It’s been a rollercoaster couple of months so just trying to work things through (given I have very little faith in him). I was slightly more reassured that referral for a liver transplant assessment was more clinical based than subjective

Thank you

[AyrshireK]

UKELD is a calculation based on the results from your blood tests rather than a standalone test - it uses your Serum Sodium, Serum Creatine, Serum Bilirubin and your INR. It should be calculated by your clinicians every 6 months or when you have a set of blood tests.

UKELD alone doesn't determine transplant need.

Katie

[Ewife]

Even if they know your UKELD score, they don't necessarily tell you, as it kind of makes no difference. Its just used mainly for them to measure I guess. We never knew my husbands scoring until he was on the transplant list and they were explaining other things to us around that time. It was a 'by the way' thing.Hope this helps.

Ewife

[AyrshireK]

Totally agree with Ewife, in 12+ years including transplant we were never told hubbies UKELD or indeed any other scores.

[Readlots]

Hi Robert, did the consultant introduce you to a liver nurse? They can be very good at explaining things and providing support. If he didn’t you could try calling the hospital main switchboard asking if there’s a specialist liver nurse you could speak to. Alternatively the BLT helpline is very good. I hope you get the answers your looking for.