Liver Transplant List.

My husband had RFA treatment last November for a HCC. He has NASH. Since this treatment he's felt worse. Saw Hepatologist yesterday about ct scans and Dr says the scans look good and the tumour "well treated." We asked if my husband could be considered for a liver transplant and were told no. His encephalopathy is worsening, he has much more pain in his right shoulder and side, he has varices and has had a small liver tumour. We don't want to wait until he is too ill for the op. Can you appeal about being refused?

[Bermuda1]

Have you asked specifically why they are refusing to put him on the list ?

[Hidden in reply to Bermuda1]

We went to the appointment with only one thing on our mind, to try and get Mike on the list. Dr saying he is still Child-Pugh A, 6 points. He has HE that he takes Rifaximin for, but no ascites. We asked the Dr to put on Mike's record we didn't agree with his decision to not offer a transplant. Christine x

[Bermuda1 in reply to Hidden]

Sorry about that Christine. Unfortunately he will not be listed at that level , have you asked for his UKELD numbers , he needs to be 49 or above to be considered unless he gets exceptions. For severe HE , which requires hospitalisation repeatedly , despite taking lactulose and Rifaximin , they may bump you up a bit , but I wouldn't guarantee it .

[Hidden in reply to Bermuda1]

Hi. No we don't have any UKELD score. Thanks for letting us know about it. The criteria for listing is very tough, it's frightening. Christine x

[AyrshireK]

UKELD actually doesn't usually apply when a liver cancer is why you need the transplant. Is your hubby being seen at a liver transplant centre? Sometimes if an HCC tumour is too large or there are too many of them then they won't transplant but I definitely think he should be attending a TP centre for them to assess and make the decision. It shouldn't be down to one doctor.

If your hubby isn't being seen at a TP centre that is what you should push for in the first instance.

Katie

[Hidden in reply to AyrshireK]

Yes, we go to Leeds. Mike had a 3cm liver tumour, which we've been told was "well treated" by RFA. Now needs 3 monthly ct scans for 12 months. Christine x

[Bolly]

Ablation is the preferred first line treatment for an HCC tumour of that size and has the same statistical prognosis outcome as a surgical liver resection of a smaller tumour. As the tumour has been 'well treated' I'm not sure why you would be thinking he should be listed for transplant? They are monitoring him according to protocol to spot any recurrence. 3 months scans is good, I'm on 6 months.

I had an HCC tumour removed 6 years ago, am Childs Pugh A, and am monitored regularly. Transplant is not an option for someone as 'well' as me, as Katie says, it might become an option should another tumour appear, but so far it hasnt.

However, if he has varicies and HE then it may be that his score is no longer Child's Pugh A. Having HE gives you extra points and varicies suggests he has decompensated cirrhosis. I'm an 'A' as i dont have HE and dont have varicies and my cirrhosis is compensated. However, as Katie says, Childs Pugh isnt used as a transplant criteria any more, its UKELD.