Liver Transplant Assessment Tests

[Braveheart65]

I have one in a fortnight. What can I expect and what shouldn’t I forget to ask? Any advice, gratefully received.

[AyrshireK]

Are you still in Scotland Braveheart and going to RI of Edinburgh? If so my hubby underwent transplant assessment there and I wrote a long thread whilst we were there and undergoing the assessment and you'll get an idea of all the tests involved etc.

healthunlocked.com/britishl...

The assessment is a very thorough MOT, looking at whether your liver is poorly enough to be at the stage where t/p is the only viable treatment now available plus to check that you have nothing going on that would make you unable to have the operation and are fit enough to get through it.

All the best for your assessment, Katie

[Braveheart65 in reply to AyrshireK]

Alas no.... I am in England, attending St James. I wish I was at home but husbands job is in North East. Thanks for the reply and........ send square slice!!! 😜

[AyrshireK in reply to Braveheart65]

Don't know how they do it at St. James's. Are you already under them or is this your first time going there? Is it outpatients or like Edinburgh a few days stay with all the tests done at one time?

Edinburgh was obviously all in one go as an inpatient, if you read my thread it will at least give you an insight into all the tests involved. Hubby was already under doctors on the transplant team at Edinburgh before he was forwarded for assessment.

By memory hubby had an exercise bike/heart/lungs stress test, CT scan, endoscopy, loads and loads of bloods (every day), a full lung exam - peak flow, lung capacity etc. Chats with surgeons, transplant co-ordinators, liver specialist dietician, anaesthetist, liver consultant know some folks see the psychiatrist on the team plus social workers to assess your support systems,

One thing that we weren't aware of but you also have to have a clean bill of health from a dentist - hubby hadn't seen one since childhood so we had to get him registered and seen p.d.q. Oral health and hygiene a major factor in preventing infection especially once you are on immune suppressants post transplant.

Wishing you all the best, a roll and slice headed your way with some tunnocks tea cakes for afters and a wee bottle of ginger to wash it down. Good luck.

Katie

[Braveheart65 in reply to AyrshireK]

Slevering..........👏👏👏👏

I went there for first time on Monday, having been seen at my local hospital for over a year.

I’m definitely progressing in wrong direction and have lots of pain almost constantly, but still push myself daily to do as much as I can.

My dentist says my teeth/gums are better cared for by me than he does to his own teeth. I see him every 3 mths, so with any luck I’ll be ok on oral health. Well everybody has to be good at something and with no access to said tunnocks, ba bru, and deep fried Mars Bars I’ve had to find other things to occupy my time and gob!

[Braveheart65 in reply to AyrshireK]

That previous post made for an interesting read , thanks for looking it out for me.

6 years ago?! Wow, the knowledge you have now re liver transplant must be staggering.

I feel a bit of a fraud in that I am still able to walk about, although have so little energy and zero stamina, but I still feel I should be “sicker” to take up the assessment teams time.

[AyrshireK in reply to Braveheart65]

Although hubby did get listed after the aneurysms were dealt with, he improved sufficiently enough to be delisted 10 months later and we are now all these years down the line so although we 'lived on the list' for 10 months we never actually got the call.

Best wishes

Katie

[Huggy7614]

Hi Braveheart,

Mine was at the QE in Birmingham in 2019

Split into three days, the first day was a full day with all sorts of tests as Katie has explained. CT, x rays, cardio function, lung function, 13 phials of blood!! So, pretty much a pull you apart, and stick you back together again!! No painful tests, just going from one to the other to the other!!

The second session was about 3 weeks later, and was a 2 day session, so we needed to book a hotel nearby. There was accommodation on site if wanted. This was a bit of a meet and greet. Met hepatologist, surgeon, anaesthetist, and so on. Also got to meet someone who had been through the process. Again they’re checking your suitability in each of their fields. It also helps to meet others in a similar position.

The assessment is nothing to worry about, but is fundamental to your moving forward. I wish you all the best for it. Get back to me if you want to know more. Andy.

[Lam1e]

Hi Braveheart

It sounds very much like every transplant centre has their own way of doing the assessments but each have to carry out the same tests! As well as having this forum you may find your home hospital has a local group, possibly patient led that can give you loads of info for you and you’d family locally and possibly put you in touch with a ‘liver buddy’! I think the North East has ‘Liver North’!

Lesley

[Steak]

Hi i had my assessment done at St James over a couple of days and was booked into the hotel part 4 a night. Like the others have said you have 2 go through various tests to make sure your fit enough to withstand the operation. After the assessment I attended a meeting with the transplant co-ordinator along with 2 other couples and he talked us through the process and we cud ask him our questions after. It was after that visit that I was told I wud be on the list in the next few hours. I had my transplant the next day so had no time to worry about the wait. If you think of any questions you want 2 ask just write them down. St James have a site for their transplant patients which I have just joined. I was extremely happy with the care I received from St James. Good luck and pls let us know how u get on. Take care and stay safe. X

[Braveheart65]

Thankyou for your really helpful advice and kind wishes. I’ll let you know for sure how things go.

[Hidden]

Morning ,

I can see you have lots of support from our fabulous forum members - never mind the Scottish food chat !!! I wont start the lorne/square sausage debate because that would most definitely start a rammy

I have included a link to Liver North as it has been mentioned - they may be able to advise on local practices.

livernorth.org.uk/

Take care,

Trust9

[Braveheart65 in reply to Hidden]

Your reply made me LOL!

Go on, start a rammy- I feel the need of some light entertainment!

[AyrshireK in reply to Braveheart65]

I prefer links myself.

[Braveheart65 in reply to AyrshireK]

Heathen!

Mind you.......plain bread and 2 grilled lengthways with brown sauce.....slevering again!!

[Richard-Allen]

The liver transplant assessment is in several different parts.

The team need to assess not only your physical status but also your mental health condition too. If the need for your transplant was due to alcohol abuse, then you have to be able to prove to the team that you are a suitable candidate and worthy of a second chance of life.

The team need to know that you're not going to abuse a new liver, or try and commit suicide. So, a persons mental health status is very important.

When I went on the transplant waiting list I had to convince the team that I was worthy. I wasn’t smoking back then which was a good start, as a smoker would be expected to stop smoking. I did have a history of attempted suicide once, which went against me. You really have to prove that whatever your mental state was, that it is now very much behind you.

You also need to prove that your alcohol issues have been dealt with and that you have contingency plans in place to prevent any relapse.

Both the “Leeds Liver Unit” and the “QE Birmingham Liver Unit” have jointly produced own publication on Alcohol-related Liver disease Liver Transplantation workbook. (I was given the opertunity of reviewing the publication in it's draft stage before it was finally agreed upon).

This workbook has a lot of information about the alcohol aspect of the condition, and you’ll be expected to answer a series of questions. It is important to complete these questions as honestly and in full. The more information you give the better. I remember feeling at the time that it was a bit like having to apply for the right to want to live.

I can’t empathise strongly enough that you have to prove that your alcohol days are behind you. You may also be expected to sign a contract stating this commitment.

Just a final word of warning. If you are still drinking, alcohol-free drinks, such as alcohol-free beers or wines, then this may well exclude you from being considered for a transplant, as the team will deem you as being a person still has issues.

I hope this helps: flipbooks.leedsth.nhs.uk/LN...

Richard.

[Braveheart65 in reply to Richard-Allen]

Stopped drinking 28th Dec 2018. Apart from feeling unwell currently, I enjoy the fact my day starts whenever I want it to andnot when I feel able to stand up without worrying about what I feel like,or having no recollection of what I said or did the night before. Or who I sent a text to or spoke with on the phone.

Don’t misunderstand me, I enjoy alcohol, too much in fact but cannot trust my judgement as I don’t know when to stop. So best not to start and I have so much I need to get done everyday and books to read/remember. I enjoy my time more than I need bottles of wine.

I’m totally comfortable being in company who are enjoying wine with their meal or a pre/post dinner drink. Or simply a sunny day with company who are having alcohol whilst enjoying the weather.

I have no desire at all, healthy and fit or poorly (as I am)to revisit alcohol personally. Indeed I’d argue with anyone that it’s easier to find justification for drinking and feel less guilty for doing so when you are soon to be looking at death. For me, there is just so much else that’s more interesting than alcohol.

And.....it’s of HUGE RELEVANCE ......that I’ve a lot of money (if you count champagne as legal tender/currency) invested in my physique and I want my monies worth!

It’s absolute fact though, unless you are committed totally to zero alcohol and if like me you don’t know when to stop, unless you can be honest with yourself and stick to that decision even when you are on your own for short or long periods, or you have bad news, a bad day at work, the weather is shocking etc etc you won’t successfully achieve your aim of zero alcohol.

All I can say with clarity (makes a change that I’ll even remember saying it), for me it’s worth my time to abstain from alcohol for the rest of my life. Not because it may bag me a liver and extra time on our planet. I’m abstaining because I’ve just got so many other things to do, experience and see with my own eyes. First on my list is the Calcutta Cup, to annihilate the auld enemy and for me to revisit the Clydeside Welder in me cheering the boys in blue to victory!

I wish anybody else who is on the journey to abstinence, the strength of mind, body and soul, to follow your journey to freedom. Baby steps will take you to jogging, running along your path to where you want to be. It’s not for everybody, but in the meantime stop beating yourself up.

[Chrissy2k]

Hi, I had an assessment for a transplant about 2 years ago, the test included a measure of your fitness, I had to walk and run on a treadmill and cycle on an exercise bike, I was wired up to machines whilst doing this

[Kristian]

You've had plenty good advice already and I'm not going to get into the sausage debate, although on what planet is it where people think sausages should be square?! 😆😆😆. Only kidding, lol.

My assessment was at the QE in Birmingham but I believe most hospitals in England now follow a similar process and do the assessment on an outpatient basis over 3 days. The process has already been described very well by others so there's no real value for you in me duplicating those.

In terms of questions though, then just ask anything, no matter how daft it may be. Others that will be there will probably be grateful you did as they may have wanted to ask the same, lol. Ask about the simple and practical stuff like how much time will you have to get to the hospital, your availability etc. Ask about what you may need to bring with you. Dont forget to ask before you leave where they think you sit in terms of scoring. They won't tell you before you leave if they think you are suitable for listing, but they can at least tell you your relative score from a UKELD perspective, or whatever they use nowadays.

Other than that good luck and I hope all goes well for you.

[Catlady1972]

Hi 👋

I have been attending St James in Leeds since about last August 2019, I was very lucky as I had a consultant at Leeds and also at the MRI. So I had the test between both hospitals, at Leeds tho I had to stay overnight and was put up in there very own on site Hotel 🙂 The test ran over two days and they may ask for a few scans to be done just to double check everything, there is nothing to worry about but I found the cardio bike a bit hard but I did have weak legS and arms . Do take a pair of shorts or jogging pants with you. The staff were truly fantastic and very obliging , but my advise to you is to were comfortable foot wear. I pasted the tests and was put on the list just two weeks before Christmas and received The phone call in February but it went to someone more in need 👍🏼 So at 23:40 on the 22 July I received another call from St James saying they have a donor liver for me pack a small bag and a ambulance is on its way to pick me up. Every thing when grate and I was back home Eight days later, visit the pre-op clinic every two weeks. So good luck with every thing and do tell us how you got on X

[Ironontheup]

leedsth.nhs.uk/a-z-of-servi...

[Braveheart65 in reply to Ironontheup]

Thankyou.