TBS score.

[Maranbou]

Hi all,I've just been put on the transplant list after my assessment. I spoke to a doctor on the phone who amongst other thing said I had a low TBS score. Is that good or bad?

[AyrshireK]

The British Liver Trust website explains the new(ish) nationwide donor liver allocation system and the Transplant Benefit Score which is used to now calculate prority on t/p list. britishlivertrust.org.uk/ne...

It looks like 75+% of organs go to people with a TBS of 1000+ so a low score (I presume) might mean a longer wait, your score needing to be regularly updated to make sure you get your chance.

Are you very symptomatic just now?

Hope you get your call.

Katie

[Maranbou in reply to AyrshireK]

No symptoms got most things under control, but I'm not complacent and know how quickly things can go south. My one saviour is my family who without I'd have gone into a self depressed, fatalist person.

[AyrshireK in reply to Maranbou]

My husband was on the t/p list in 2014-2015 and was told at the time he was only 'borderline for listing'. His main symptoms were/are quality of life related rather than life threatening and he was unlikely to ever actually get the call - he would never be high enough priority based on his symptoms. After 10 months and an improvement in his bloods he was delisted and remains stable to this day - yes, no where near 100% fit or living a normal life but living his best life despite it all.

So, just get on with life the best you can. Transplant is a life saving operation 'only' so unless you are hugely decompensated or suffering from a time critical liver cancer your TBS is probably reflective of this. When hubby was delisted we were told the that with his current state of health then the risks of transplant actually outweighed potential benefits as they couldn't totally guarantee that transplant would actually improve the quality of life issues.

Hopefully you remain stable and that transplant doesn't actually become necessary. You may even become 'well enough' to be delisted because life on the list can be very restrictive if the chances of you actually getting the call are slim (i.e. not rising to the top of your list because you are too well).

Best wishes,

Katie

[Yellowsydney]

Hi, If you use Facebook please feel free to join our friendly and knowledgeable Facebook group called liver transplant support uk, thousands of people that have been or are in your situation. You will find lots of support on your transplant journey.I had my transplant before the TBS scoring system was in place so don't know much about it, but a low score would put you further down the list, things are constantly changing which is why you will have frequent clinic appointments to access you, you may find things dramatically change and you end up at the top of the list very quickly.

Hilary x

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Maranbou

If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers) including a pre and post transplant group.

If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust