How can you find out if your doctor has got you on a liver transplant list(s) and is there anything you can do yourself to get put on a list

[cirrhosis35]

I need to know what I can do myself to get my name on the list(s) for a liver transplant and is there anyway to find out if your name is already on a list(s) or even if you are a candidate for a liver transplant?

[Hidden]

Hello cirrhosis35.

Well I cannot answer your quiestion fully but can only say what I know that could be right. If you are in the UK and under the NHS I think what happens is you have to be at a problematic level with PBC and having certain symptons that keep requiring treatment (ie persistent abdominal fluid and jaundice I imagine).

I am certain like in the US there is a scale to assess whether a patient could be put on to a liver transplant list.

I then would expect to receive an appt to see a consultant at the hospital where transplants take place and take it from there.

I do think your GP would know the outcome and could inform his/her patient whether they were on a liver transplant list. But I do recall reading on here almost 2yrs ago now that you have to have tests at the hospital unit where these transplants take place and then one would be most certainly issued with instructions for when the time arises as a donated liver is time-sensitive.

I am not sure how one would go about being included in a transplant list, I do think that would be at the discretion of the doctor and current condtion of a patient at the time.

I am sure someone else on here might know more, I am just going off what I have read in the past.

[Nanbn2]

I had a liver transplant in 2004 when I was diagnosed with end stage PBC. I first saw a consultant at my local hospital and when blood tests, a biopsy and other tests showed my liver was badly damaged I was referred to the hospital where they did transplants. I then had to see a consultant there and then had to go into hospital for extensive tests to make sure I was suitable for the operation. All this took about 6 months before I was put on the list. I live in the UK so don't know how it's done in other countries but remember not everyone with PBC needs a transplant. As peridot says it depends on the state of your liver and the symptoms you are suffering from. Hope this helps.

[June9961]

My sister had to go in for tests and counselling before she was put on the transplant list. She was also given a beeper. She was only on the list for a year before they found a compatible liver. I dont think they put you on the list without you knowing.