Wonder

[Wowz]

We are from the US and the liver transplant team goes by a MELD stand for Molding Endstage Liver disease. I’m not sure how your works but for ours there number from 6-40 6 being best 40 totally worst. My husband is at a 13 but has many end stage liver symptoms. How do you guys find out how the end stage is getting worst and some stories of how it gets worse and are there symptoms of getting worse or just surprise the liver is worse ?

[Lucdizz]

Hi Wowz, I’m also from the US, My MELD was 37 when I got my liver transplant, I’m not sure but I think is the same in the UK... Id celebrated my 2 years last week! Unfortunately don’t get on here very often due to work! I hope you get answers you are looking for from the very nice people here! Good luck and take care!

dizz

[Popel]

Hi there.in the uk it’s called ukeld and it’s worked out by our bilirubin.creatine ,sodium and INR levels.mine was 21 don’t know what the equivalent in USA is but I was transplanted with that number .even though the number is that high it was because I had a portal vein thrombosis.all the best.paul

[Bootandall]

Hi, I'm in the U.S. too (NC). You're talking about the MELD score, which stands for model-end-stage-liver-disease, which is an algorithm that factors the bilirubin and creatinine levels with the INR, a measure of blood clotting capabilities. It sounds as if UKELD, according to Paul, also measures sodium levels, not certain how that affects it, but the model is used the same way. Which is, to see how close your levels trend toward the outcome of liver failure, the higher the score, the closer you're trending towards it, thus the higher your priority for transplant. As liver disease progresses, the score goes up, but it can also go down. So it's not set in stone by any means, and your husband's score may even go from decompensated to compensated and vice-versa, this is one reason why we get check-ups. Some symptoms are very common ☹️, itching is common when levels of bilirubin rise for example or nosebleeds when INR levels change. But not everyone gets the same symptoms or even to the same degree of course. One important thing to remember, there are things to watch for, but liver disease is generally very gradual. You can't go wrong asking questions here, everyone is very helpful and friendly. You would be surprised how often someone else is going through the exact same thing you are!

[mncold]

Hi Wowz,

I would call his doctors and tell them you need more information about what to look for and what you need to do to help your husband.

We are in the US. My husband was in liver and kidney failure Nov. 2015,

and is now sitting at the table with me. We just got back from a trip from Minnesota to Arizona - he drove. Today he was out working on the car, yesterday he mowed some of the lawn. Transplant has never been recommended to us and his liver doctor is head of the transplant team at the hospital.

The Trust has several resources you can read and you can message them directly, I think for help.

The UK does things differently, so I think you need to get most of your info from your husband's doctors and transplant team. I would say feel free to keep calling them until you get information or until they tell you where you can get that information.

Best wishes,

Mary