I have been to see my liver consultant today, he said I need a transplant I was diagnosed with Cirrhosis two years ago had a varicella bleed in a year ago I was doing ok till June but the blood tests are getting worse since then. I will need to go to Leeds hospital, I live in Liverpool.
im terrified by it all.can any one help.
Regards
Lorraine
Hi Lorraine, hopefully when you get to Leeds they will help to dispel some of your anxieties. First appointments with transplant team are usually a wee history taking exercise where they have a good chat with you, take their own bloods and draw up a plan of action. It may be that Leeds can offer some more treatment options before jumping straight into thinking about transplant. It obviously depends on what symptoms you have, cause of your condition and if they think you are needy of transplant.
If the team feel that you potentially do need a transplant then you'll be put forward to be formally assessed before any decision. They need to make sure that (a) your liver isn't in a treatable state by any other means i.e. you are poorly enough to need transplant and (b) are you well enough to actually undergo transplant? Are there any other conditions going on that might get in the way of transplant - heart and lungs healthy enough, sufficient body weight, no extra hepatic cancers etc. etc.
A multi-disciplinary team will look at all results from your assessment and determine whether they will put you on the list at that time or keep an eye on you with a potential view of listing later.
My hubby was under Edinburgh Transplant Unit for a year before he was formally assessed, they basically took over his care from local gastro, did all his banding and eradicated his varices (42 banded), did another biopsy, got him to see dietician and more. A year on when they said they couldn't do much more to treat him they assessed and then listed him for transplant. During assessment (which is the best full body m.o.t. you will have) they found he had aneurysms in his splenic artery which hadn't been identified earlier and they rushed him into having an embolization operation after his assessment. After 10 months and probably due to his spleen having died he actually got delisted from t/p list because all his blood improved so much he no longer met the criteria for transplant.
Transplant is a life saving operation ONLY so if you are offered one it's because you need it as probably the last remaining treatment option. There are loads of success stories on here with folks who have had t/p - ok not everyone gets the happy ever after and often recovery can be a challenge but the vast majority have good outcomes.
Hopefully someone who knows how the Leeds transplant assessment works will pop on to fill you in on that side of things - each centre does it differently. My hubby was an inpatient at Edinburgh for 4 days for his with all tests being done that week (CT scan, heart stress test / exercise bike, lung tests, dietician assessment, endoscopy, chats with co-ordinators, surgeons, anaesthetist, social work etc.) the multi-disciplinary team met on the Friday and reported back their decision before we left on the Friday afternoon.
Best wishes for it all,
Katie
Thank you Katie, I know they’re doing everything to help me get better. It’s early days.
Hope your hubby is well.
My hubby is still pretty stable - 7 years on from being delisted from transplant list. He took up cycling in 2021 and hasn't looked back as regards making the most of good days. He isn't well by any means but does ok in the grand scheme of things - back to 6 monthly monitoring and watch and wait.
Katie
I had one in November, and to be brutally honest, it’s not a pleasant experience. But the unpleasantness in my case was completely overshadowed by how much better I felt pretty much immediately after being woken up.
Feel free to ask me anything if it will help 🙂
Hi, I'm 5 1/2 years post liver transplant. I'm not going to say it's easy because it's not. First you will have a transplant assessment to if your body is got enough to withstand the surgery and then the wait whilst on the list.If you use Facebook please feel free to join our friendly and knowledgeable group called liver transplant support uk, thousands of people that have been in your situation, including many that can give you first hand advice about Leeds.
Please don't feel alone .
Hilary ❤
I just been for my first assessment at birmingham QE they really put your mind at ease i was so worried at first could not believe i needed one it was a shock but i feel positive now they are great at what they do try not to worry good luck
lon
I’ve recently undergone transplant assessment in Leeds. I think they do it slightly differently in that they try and arrange everything in a day. You get ultrasound, CT scan, chest X-ray, spirometer test, echocardiogram, heart ultrasound, blood tests, fitness assessment (grip test, short timed walk and standup/sit down test), meetings with transplant coordinator, surgeon, anaesthetist, social worker, nutritionist. They give you a lot of leaflets to read beforehand which explain a lot of how the process works.
They then assessed whether you were suitable the following week in a multidisciplinary meeting and rang with results and got you back in to go through any further questions and the consent form.
I have to say I live very close to Leeds hospital and had been in and out of hospital prior to the assessment and already knew many of the consultants. I have a rare condition causing my liver problems (Budd Chiari) and I am in good health other than my liver.
I am not sure what happens if they find other issues eg heart or lungs.
It was a very full on day. Make sure you do read the stuff they send in advance and prepare questions and take someone else with you as not all the information will go in.
I was accepted and currently have had 2 false alarms where liver unsuitable so still waiting.
Good luck with with your assessment.
Hi I had a transplant in 2017 yesits daunting when they first mention it but I can only tell you my experience at the Queen Elizabeth in Birmingham. The initial assessment is pretty much straight forward they check you heart which I wasworruedabiut because I'd had a heart attack in 2010 but it was fine .I got recommended to go on the list blood group a positive I only waited 2 week in on Easter Sunday out the following Saturday. First couple of week is difficult back wards and forwards to Birmingham from North Wales so a bit of a pain but it ended soon .I was diabetic for about 5 week had to inject insulin but you cope ,but luckily kidneys went back to normal. Back at work 3 months later I'm a tree surgeon 62 then 68 now .nearly six years on the memory is fading you recover I was quite fit to start with no symptoms so lucky but overall I'm glad it happened to me it's made me stronger and a better person I think of my doner most days and give thanks for the wonderful staff at the qe hospital .I know it's a worrying time but you will get over it and thrive good luck and enjoy the ride
Hello, just trying to reassure you.
My husband had a transplant over a year ago and it has been very successful. The assessment was as an inpatient as he was very unwell having been in and out of hospital with complications of his cirrhosis. The assessment was very though and fortunately for him his liver was in such a condition that he was listed high on the wait list and had the operation shortly afterwards. It is a very stressful time emotionally but it is something that I still marvel at that they can do such operations and save a life.
There are really good support groups like the British Liver Trust which are an excellent source of information and support which you might find useful and others here have recommended a Facebook group. There’s a helpline and online group meetings. The helpline might be a good place for you to start your journey. I think it will be reassuring for you to talk to people who have been in your situation as well.
Good luck with everything. Try to be positive about it. It’s very hard for you at the moment with the worry and uncertainty but once you’ve recovered from the operation it’s makes unbelievable difference to the quality your life. My husband has never looked back. We too thank the donor and the fantastic liver team.
🤗🤗
Lorraine. Try the BLT and apply to get on to their forum.Initially speak to their nurses for sound advice.I have been on the list 9 months
Dave
I am already on their forum and will be speaking to them for some advice.
Too anxious? 
feeling a little lost
Some really good news at last...
Ratio really nervous 
