Jaundice

[66766]

What is the longest anyone has had jaundice with decompensated cirrhosis

before transplant?

[AyrshireK]

I note you've asked this or similar questions a number of times now but I am not sure anyone can give a direct answer.

Jaundice levels come and go dependent on the level of bilirubin that is building up in the patient. It is possible for a decompensated liver to become compensated again too. When my hubby was first diagnosed in 2012 he would have been considered to be decompensated, he had deranged Liver Function Tests, had a massive bleed from varices due to portal hypertension and was very jaundiced HOWEVER his colour recovered to near normal - he's sort of olive skinned anyway so apart from back at the start we've not noticed him massively yellow again. He was listed for transplant but improved sufficiently to be delisted although is still being very closely monitored.

When you ask about decompenstation and times to transplant no one can really answer. What symptoms is the patient in this case displaying? Have they actually been assessed for transplant?

When a person is assessed for transplant they are assessed to see what sort of state the liver is in, what symptoms are present and what the UKELD score is (United Kingdom Model for End-Stage Liver Disease) the minimum score for listing in the UK is 49 which is based upon a calculation taking into account Bilirubin, Serum Sodium and Serum Creatine plus INR (blood clotting time). This all decides IF transplant is necessitated and level of urgency. Patients then attend transplant clinic regularly and their level of urgency is assessed after each clinic where blood tests are taken.

The second part of assessment looks at the patients health overall and assesses heart, lung and general health to check that the patient is fit enough to undergo the operation. Patient has to have no other cancers, heart or lung conditions that prevent the massive operation from going ahead PLUS to ensure there are no contraindications - ongoing alcohol / drug use etc.

Some details about the NHS listing criteria is at :- nhs.uk/Conditions/Liver-tra...

Once a person is listed for transplant - the transplant co-ordinators and multidisciplinary team draw up their list for their particular centre. When a suitable organ donor becomes available they will check which of the patients on the list match the donor organ by blood group and body size and then they will phone the most poorly person who meets that match.

The length of time someone waits depends on a massive number of factors - the most poorly person will always rise to the top of the list even over people who've perhaps waited many months or even years. If you are the most poorly, who meets the specifics of an available donor liver then it would be you that gets the call. SO, how long folks wait is like how long is a piece of string? Some people on here have waited hours or a few days after listing, some people have waited many months, some years. You only get to the top when you are the most ill person on the list.

Quite a long answer but you don't give a lot of information in your question or in your previous posts.

Katie

[Millie09 in reply to AyrshireK]

thanks for the reply to the post from 66786 .I found it so very informative .I am as yet as far as I know not or will be fingers crossed not on a transplant list but we just never know do we how things can change .I'm glad to hear that your husband is still doing as well as expected .same sort of situation but my first appt ever with a hematologist is on 28 Feb .I'm need to go as I have received not develop Feeling right for two weeks nearly .I am due to see my dr on Monday .there are so many things that have to be done before you are even fit enough yet poorly enough to be getting a transplant.so many tests etc .. did not actually realise how much you go though .thank you . best wishes linda

[RodeoJoe]

As Katie says it varies. For me I had been slightly jaundice around the edges of the eyes for many years but almost unnoticeable to anyone else. I went down hill over about 6 months and gradually became yellower. First the whites of my eyes and then the rest of my body went from a sallow sort of colour to almost a tan and then yellow, like I say this happened within about 6 months.