Is a biopsy done at every liver transplant assessment week?

[Doddiedog]

Hi there, posting for the first time 👋

I'm going down to Edinburgh for my liver transplant assessment week on 3rd September.

I got diagnosed with decompensated cirrhosis last August, not touched a drink since and am doing what I'm told (first time for everything!). The hope was that I could get my liver to a compensated state to delay the need for a transplant.

In May my consultant said she'd have expected my bloods to be further on than they were in some areas (bilirubin), and thought it could be something autoimmune. The autoimmune tests came back negative, MRCP came back okay.

She then said a few weeks ago she thinks it's time. A bit of me thinks that she looked for one thing, it wasn't it, so just sends me off for a new liver. I never got a biopsy.

Anyhoo.. does everyone get a biopsy at their assessment? The unrealistic dream is that I'll get a biopsy and they will find this secondary thing my consultant couldn't, give me the right treatment then I'll get my liver to a compensated state 😂

Any help appreciated! Not sure if I'm meant to put my UKELD/Child Pugh/Fibroscan/any other numbers on here. Just in case there's a competition nobody wants to win for the highest score. Sorry if that offended anyone, inappropriate humour is my coping mechanism of choice

[AyrshireK]

You probably won't get a biopsy during transplant assessment week but i'd be surprised if Edinburgh didn't want to try and establish the cause of your issues.

I know my hubby was sent to Edinburgh in 2013 with the team doing loads of input before finally assessing him in a year later. It might be that they decide it isn't yet time to list but they will give you the most thorough full body M.O.T.

My hubby was first assessed for t/p (and listed) in 2014 but got well enough to be delisted 10 months later. Sadly after a severe deterioration at the back end of last year he was assessed again in January and very fortunately transplanted on 24th June.

They are a super team at Edinburgh and will come to the correct decision whatever that may be for your degree of ill health.

Katie

[Kristian]

As Katie says, it would be rare to do a biopsy at assessment. That would very much be the exception. It would be nice to know the cause if there is some uncertainty, but it's not the key factor when it comes to assessing need for transplant. They do lots of tests on the liver they take out anyway, so no need to do a biopsy before if you're at the stage when a transplant is needed, lol.

Also, keep your sense of humour. I found having a bit of a sense of humour with things is very helpful. So no need to lose that. It's very muchba positive not a negative.

Good luck.

[Yellowsydney]

Hi, no they won't do a biopsy at your assessment. If all other tests are inconclusive they may order a biopsy. I had 2 biopsy both were inconclusive so they could only go on blood results, ultrasound and decided straight away I needed a transplant.If you use Facebook please feel free to join our friendly and knowledgeable Facebook page called 'liver transplant support uk ' thousands of people in your situation.

Hilary xx

[Ewife]

Hello,My husband never had a biopsy either. It was thought that medication combined with alcohol (but not problem drinking) was the cause. His condition worsened quicker than expected despite abstinance and resulted in a life threatening bleed. He was sent for TP assesment and to our surprise, listed. Spent some time on and off the list as his numbers stabilised. They never improved, but were never terrible like some on here report, but consistantly 3xupper limit roughly.

End of 2023 he caught food poisoning and went downhill really fast from there. He was transplanted 3 months ago. Histology since confirmed he had a form of hemochromatosis (not the genetic form he had been tested for previously) which explains why abstinance didnt have as much affect.

Its important to trust the Drs, theyre so clever and experienced - but don't be afraid to ask questions, tell them what you think etc. They expext this and will be happy to answer concerns. Tell them your hopes too and see how they respond!

My husband didnt initially feel he was sick enough for transplant - but i can see now why they wanted him listed earlier. If you go downhill it can sometimes happen so fast.

Take care and all the best

Ewife

[Petrina_gmfc]

Hi Doddiedog I have not had a transplant but I know a few who has two of my friends help out at Edinburgh hospital they go round to see the new patient s and tell them what they have been through they are very nice people Let me know how you get on and I will tell them to look out for you do you live in Scotland .

[Bantam2]

Hi I was the same as you. Stopped drinking and hoped that as generally fit I wouldn’t need a transplant. Unfortunately it was too late. No I didn’t have a biopsy before assessment as because blood was thin they didn’t think it was a good idea and they could tell from bloods and scan I needed a transplant. Had mine 18 months ago and feel terrific.