I'm wondering at what point do the specialist decide to put you forward for a liver transplant? I am now in a position where we are being told it is too late as my mum would not survive the surgery and she is too weak. she went in for a regular drain of the ascites fluid and ended up with AKI and in ICU with us almost losing her. I feel she has really been let down and forgotten about. I know we do not have long left with my mum and I see her deteriorating before my eyes. She is not old, in the early 60s, and never drank, she was diagnosed with fatty liver disease a good 20 years ago, started having regular banding in 2015 due to them bursting.
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tink01
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Really sorry to hear about the situation with your mum. I take it she has never been referred to one of the transplant units at any point in her care?
We asked about referral for my hubby after a year of seeing a local gastroenterologist whom we felt was out of his depth regarding hubbies condition (sometimes you have to push for the care you feel a loved one needs and deserves). Hubby was referred to Edinburgh a year after being first diagnosed with cirrhosis due to auto immune liver disease (his main symptom at that time was varices and symptoms associated with minor HE). Consultant at Edinburgh then put him forward for transplant assessment another year on (2014) and he was listed for t/p although improved sufficiently to come off the list after 10 months. We requested that he remain under the care of Edinburgh for monitoring as we sort of have little faith in local gastro and that remains the situation to date. We are in a watch and wait situation with Edinburgh overseeing hubbies care.
If mum isn't being seen at a transplant centre I would near on demand that she still be referred, without getting hopes up too much but transplant centres do have the expertise on staff to try and build mum up for transplant.
A local doctor can't make the decision that she isn't fit enough - the transplant assessment process would do that and it's a big multi-disciplinary team who make the decision. They can involve dieticians and a whole manner of folks to try and get her fit enough.
It's a bl**dy outrage if they have been 'monitoring' her all these years to not put her forward for potential assessment in time for t/p it to be a possibility. She's evidently been poorly for some time and with varices bleeding in 2015 she had decompensated symptoms way back then.
I would still be pushing for her to be referred, we've had people on here in some pretty dire situations who have gone on to have successful transplant and age is still on her side.
I am really glad your husband is doing well but you are right to be cautious, I really have no faith either. Mum should have been sent ages ago but I feel so very sad with my own ignorance of her condition and feel partly to blame because she was getting weaker through covid and instead of seeking the help to fix her or pushing for more treatment I was finding ways to make her life easier like a wet room and stairlift. she is like a frail old lady now. I thought well this must be normal as the specialist are not concerned! she was going for drains and coming home. The moment we realized she was in the terminally ill point was when she had been admitted and got told she was looking at only two years left to live, she was by herself on the ward with this news being broken to her. They weren't even going to send her to Leeds until I practically begged them, I said how can you take that chance away without them even seeing mum? they ended up taking via ambulance to Leeds, what we thought was an assessment and she would be there for a few days. Turns out this was just a consultation, who told her, again whilst she was alone due to covid that it will take a miracle for her to get better. They asked by this point again after having the AKI and ICU stay if she wants to know the predicted time she has left but she doesn't and nor do I. I cannot accept that I will lose my mum so young. she seems to have so drastically changed before my eyes. I am scared.
My hubby got told in 2017 he had Cirrohsis (Nash) we were lucky to be put with st Mary’s liver clinic, only 4 yrs on have they put him for assessment with royal free as he has gone down hill in the last 18mons following HE attack which left him with decompensated liver, in the last 6 weeks he became very weak and could not get up the stairs, they took him off satins meds which he had been on for 14yrs and is now back from the weakness fingers crossed for next week at the royal free ( maybe look at any meds mum might be on) good luck
Hi tink01
We are sorry to read your mum is so unwell and there have been concerns about her care.
Have you thought about contacting PALS?
The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers.
I was lucky enough to be referred to Addenbrooks from a local gastroenterologist very quickly as I had fatty liver NASH and ascities drained only once though I was on list for transplant after about 4 months and waited 9 months before transplant. I look back at photos now not realising how ill I actually was and looked !
I had an assessment week in August 2014 and it was after that I was told I was going on the list.
I was 56 at the time of transplant so possibly near your mums age. So good luck with pursuing it further .
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