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British Liver Trust
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Liver transplant waiting times.

My husband has NASH and HCC.

His first liver tumour was treated by RFA. Now he has another one and he has just had TACE treatment and may still need ablation too.

Although not assessed for a liver transplant, we've been asking how long the wait is. We're being told three years, is that a normal wait?

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Hello,

I hope that a transplant is something that you don't really have to contemplate for quite some time and your treatment is successful.

The best place to find out the facts is from the organisation that coordinates organ donation and transplantation the UK. This is the NHS Blood and Transplant department.

There is a link to their latest annual report on the British Liver Trust website.

The answer to your question is to be found on page 20 of the report.

Hope this helps,

Jim

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Thank you for this information, we appreciate it very much. Best wishes to you and your partner. xx

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Sorry to hear about your husbands condition, these are difficult times for you all. A lot of this will depend on whether the tumours are cancerous or benign. I had three of the little blights removed using RFA treatment. Each of the tumours have to be at the correct size, so if they are too small, it's a case of waiting for them to grow larger. I had five tumours in all, but I was fortunate enough to have a transplant.

Is your husband presently being treated at one of the specialist liver centre's? I think if I was in your shoes, I'd be wanting to know what the long term prognosis looks like, and what form of treatment are they looking to do in both the short and the long term. It's totally unfair not to keep you in the loop, as these must be very worrying times for everyone.

I hope all turn's out well.

Regards

Richard

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Hi. We visit St.James's Hospital, Leeds. Know there is a shortage of organ donations and a long waiting list, but three years just seems forever. Luckily, both of the tumours have been found at an early stage, and the idea was they could (hopefully), be treated. We're waiting for a CT scan appointment after the TACE treatment, then we should see the Dr again about possible ablation referral. Getting together a list of questions for this meeting to see where we're going and what options are possible.

Thank you and best wishes, Richard.

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Good Luck to you both, I realise it's a worrying time but try not to dwell to much on it. Baby steps, one step at a time.

Richard

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Hi

I really wish you both all the luck in the world. I hope you get some answers very soon. Please take care. Love and hugs Lynne xxxx

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Hi Lynne. We hope so too. Going to try and get hold of the liver nurse tomorrow to sort out some appointments.

Sending a big hug back to you, and much love xx

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Thank you xxxx

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3 years once on the “List” sounds like a long time. I also have Nash & HCC your treatment will be dependant on many factors. To be considered suitable for transplantation involves a battery of tests to evaluate your likelihood to survive what is a major operation. What are your prospects like without a transplant etc etc. I spent 18 months on the list before a suitable organ was found (I represented a challenge due to a previous resection), and when they opened me along the same scar line I suffered a major haemorrhage and my family were told I had about 24 hours to live. This was all around about 18 months ago and although internally I still have the same diseased liver, my life whilst not without challenges carries on without barriers. Any recurrence of tumour growth is controlled by way of embolisation and despite having had 5 prior to the attempted transplant and was informed that this was no longer a treatment option after the aborted transplant, I have had the procedure a further 5 times and counting. I believe the record number of embolisations is 26 so my 10 so far is a quite paltry effort. It will be important to be assigned a hepatologist who will monitor his overall health, and will play a part in deciding what treatment is required at their regular MDT meetings. This forum is a great place to share your experiences and seek guidance from people who are either living with liver disease, or have had the miracle of transplantation. Every day is a bonus and as long as I make Wednesday this week i am looking forward to 3 weeks cruising from a Singapore to Abu Dhabi ticking things off my “Bucket List”. So as you will gather we are all very different individuals, and as some of my friends like to say “It’s not the dog that’s in the fight, it’s the fight that’s in the dog”. Please keep us informed as to how you are getting along.

Ray

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Thank you Ray. You are inspiring and I wish you a wonderful holiday.

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Thank you

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