Hi been here nrly a yr reading your posts, thanks.
Bit of background partner has had cirrhosis for quite a few yrs, 'normal life' full time job , few cans every night. Regular scans showed a tumour . Ablation May 2020 successful. In Leeds. Back to normal life ' work still drinking beer' not seen by no one because of pandemic.
Jan 2021 massive variceal bleed, banded In ICU for 5 days. Out of hosp with a cough tested pos for covid, massive muscle loss, jaundiced. So very poorly not sure from liver or covid more, no one would see him because of the covid.
No alcohol since that night 3/1/21 very proud of him. Not worked since that night and then made redundant. Not well enough to work since.
Back to seeing Gastro at local hosp (amazing consultant) Every 3 months, Inc scans blood tests every 6 wks. He didn't make us feel as tho we should be worried. No appts at Leeds because of covid few Tel appts. He also has Ascites goes to local Infusion centre every 2 wks never ready to be drained. On diuretics.
Last week trip to Leeds it's just over 100 miles round trip. I asked the question so can decompensated go back to being compensated. And that's when she hit us... They would of thought that it would of improved by now no alcohol good diet. His AST and alt normal but his birilium high and platelets very low. His only option liver transplant, so we have the assment booked for Feb 22/23rd. He doesn't know whether he wants it , whether he is fit enough to have it. He gets very fatigued. Slight HE some days. Don't know really what I'm asking but how is the assessment? For those that have been there. Thanks for reading my long post.
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The transplant Assessment is really just a few days where you get to find out about the transplant process, meet the people involved and ask as many questions as you like. Its also a chance for the medics and surgeons involved to see you too. Its not really a very complicated process at all.
Usually its done as an outpatient over 3 days. The first day is a basic introduction and they tend to do some initial scans and tests on this day too. A load of blood tests, an ultrasound, and ECG. Its all so the hospital likely to do the transplant has an up to date set of results to see if you are both ill enough to need a transplant and fit enough to have it.
The second part is usually over a couple of days where you go through the processes in more detail and you also see each of the medics involved. Those two days are just like a few clinic appointments all rolled into one, lol. Again nothing too harrowing.
Basically transplant assessment is nothing really to stress too much about.
I have seen before people thinking they didn't really want to go through it or the transplant. However, I would always advise people if they have the chance to do it, then do so. The change in how you feel afterwards is just massive. It really can give you your life back and is well worth it. If the opportunity arises, grab it with both hands and dont let go.
Thankyou Kristian, I think it just came as a shock , you've explained it very well. That's what I've said to him this is real hope of his (our) life back let's take it by the hand . I get it he's scared ( me too but I don't tell him that ) hope your well too 😀
Thats understandable. The unknown is always a little scarey.
I'm just coming up to 5 years post transplant and all, touch wood, is well. I'm generally fit and active. Get out and about, run and walk in the hills. If you passed me on a mountain you wouldn't know I'd ever been ill, let alone had a transplant.
I am sure our forum members will continue to share their stories like Kristian .
I have simply attached our generic information re liver transplant , but I am sure the personal stories will be very useful and reassuring.
Hi,My husband under went a transplant assessment in Nov last year. He was assessed as an inpatient due to travel distance from home to the hospital.
Lots of tests, scans, bloods, endoscopies, X-rays etc.
I had a meeting with transplant coordinator and surgeon.
Very good and informative.
My husband was declined to be added to the list due to been too poorly and other underlying health issues and they didn’t think that it would be in his best interests and they don’t think he would survive the op and anaesthetic.
His discharge makes for interesting reading he has now been referred back to the liver team at our local hospital.
Just be aware that he needs to have gone 6 months without drinking to be considered for transplant.
My advice go for it, initially my husband wasn’t convinced it was right for him, however his consultant explained that he was out of options and without intervention he wouldn’t get any better.
Hello Army. I too have had a transplant just before Christmas. I was up and walking around on day 2 (lucky, not everyone can) and by the second week I had felt around 80% better. Now I have no symptoms of cirrhosis and I haven't felt this good in years. Wake up sometimes still expecting to be poorly (what is going to be wrong with me today) then realise that I feel fine infact great.
Right the first appointment you will meet everyone have a chat with your consultant (you will see others on the way) and dietitian. You will see the alcohol liaison officer, liver transplant specialist nurses and maybe a surgeon. (This was Leeds hospital and the hole team are amazing and he will feel comfortable and be able to talk about anything and everything).
The second visit you will have an ECG, echo scan, CT scan, x-ray maybe a Ultrasound depending. You will also go through some physical tests breathing test (blowing in a divice), walking/running machine or exercise bike, balancing and testing your strength. You will meet the other side of the team who are also fantastic. Little interviews and you will meet the specialist consultant who will look at your over all likeability for a transplant.
My advice to you would be to get this done, (like I said "I have haven't felt as good for a long time") try to get a little fitter, go for walks, do some stretchers and breathing exercises. The fitter you are the better the chance of a transplant also the less complications during the operation. Being abstinent for at least 6 months is necessary but you said he hadn't drank for over a year (so he will be fine, there will be blood tests to check). Leeds hospital is the best I've ever been to and the hole liver team are excellent.
They then will sit down together and make a decision on you as a person and all your test results. Then you get a phone call with a yes or no.
Thankyou Danny I've read many of your posts over the last few weeks, so glad your feeling so much better. Fingers and toes crossed we get the ok! Keep being well and stronger every day 😀
You are really lucky getting in with Leeds hospital..! Upstairs in Bexley wing is a fantastic place to recover in.I used to get the train to Leeds, I live a distance away. You get used to it, I turned it into a day out. Infact I did a bit of shopping in the centre in October. The city is great, lots of shops and not extremely busy.
I actually have an appointment tomorrow but taxis only (not allowed on public transport for a while) immunosuppressants, so I have to be careful.
Like I said brilliant team nothing to worry about,
Danny x
PS. The team, mainly the consultant asked me if there's any questions I have, I asked "if she was in my shoes would she have it done"? She replied (instantly) "YES"😉.... good luck x
I was in a very similar position to your other half in December 2018. Was so shocked when I was told I needed a transplant. I had great advice from the dietitians and although very weak I tried to walk every day and followed their advice. I too had ascites and was emaciated, so it wasn’t easy. The area lacking any support was psychological for me, so do see if there is anything available.
Assessed for Transplant in August 2019 and a new liver in December 2019. Now I am in work, and I have my life back and I am going to the gym and swimming 3 times a week.
It’s not been an easy journey, but it is worth it every single day. Forever grateful to a lovely man and his family who agreed to organ donation🙏💜
My last little bit of advice, is focus on each part of the assessment. Then once one is complete focus on the next🙏
If you think it would be useful please don’t hesitate to get in touch👍
Thankyou for your story, yes worried about his mental health , he's very private doesn't like to talk about it to other people . Happy for you , stay well 😀
Just like your partner I had a massive bleed (8 pints) and was in hospital for nearly two weeks. I had NAFLD and was only given six months with out a full liver transplant. I made it through all the assessments and test and was well enough to make it on to the LIST 🙏🏼
Eight months after going on to the list, July 2020 I was blessed to receive a transplant and I was in the care of Leeds. The staff are just amazing , I wish you and your partner all the best X
I'm now nearly 5 years post transplant, had mine at Addenbrookes. The assessment is really nothing to worry about, I had mine as an inpatient for 3 days, lots of blood tests, ecg, CT scan, x ray, lung function test, heart scan, meeting the coordinators, surgeon and aenethatist. They have to check that you are healthy enough to survive surgery.
If you use Facebook we have an amazing,friendly group called liver transplant support uk where you can talk to hundreds of us that are either waiting for transplant or have been transplanted.
Hello,My husband is also has decompensated liver and had a transplant assessment last year at kings college. He wasnt sure he wanted to go as he has severe anxiety and struggled accepting his illness, his gp put him on something for his anxiety and we managed to get support counselling (private counselling for life changing illnesses) The transplant team were fully aware of the stress, worry and illness and couldn't have been kinder or more helpful (after all youre not going because you're fit and well) we had to stay at the hospital and the accommodation was wonderful. It took 3 days of sitting around but they answered all our questions and ones we hadnt thought of too. They wanted to meet me too as I was his support and carer.
I wish you both luck and remember that you can say no thank you to a transplant if you're offered one.
Transplant assessment is the best full body MOT you can ever have as they basically cover all bases so even if he decides he wouldn't want to go ahead with transplant the assessment itself is worth having.
During my hubbies assessment they discovered that he had numerous aneurysms in is splenic artery - they had never seen these on any previous tests & had these not been discovered he could (at some point) have had a major catastrophic bleed. Discovery of them allowed them to arrange emergency surgery and the week after his transplant assessment he had the aneurysms embolized - which as a side effect actually had the knock on effect of improving his liver functions, reduced his portal hypertension and more. He did get listed but because of the embolization procedure it actually made him well enough to come off the list after 10 months.
Your hubby needs to realise that they only list/transplant the most poorly people, by the time you reach discussion about transplant it means it's really the last throw of the dice, all other treatment options have been explored and transplant is the next line of treatment. Transplant is a life saving operation (only) - they don't give it to improve your life, just to save it.
Whilst it is scary (majorly so) it is also the potential light at the end of hte tunnel.
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