Liver transplant assessment.

My husband has been referred to St.James in Leeds for an assessment, does anyone know what we should expect?

Thanks.

[Identity75]

Hi,

I had my transplant at Jimmys, although I was actually assessed at Kings, (long story). However, they are all pretty much the same with just a few slight differences.

Normally it’s based over a couple of days, the first day is pretty much all tests of different kinds, lung capacity, chest X-rays, they do a “fitness” test either on a treadmill or bike.

The second day is more meet the team and educational.

Take something like a book with you cause there can be a bit of waiting around especially on the second day.

The guys at Jimmys are absolutely superb. They are such a kind and caring bunch, you really couldn’t be in better hands.

Wishing you all the best.

[Hidden in reply to Identity75]

Thank you, that's really helpful.

[Barnetaccounts]

Hi,

It’s like having a top to toe MOT. They check everything, bone density, brain scan, heart, lungs, talk to you, your family about the severity of not only your illness, but how major the prospect of a transplant is. Once all the checks have been made you will fall into one of 3 categories. (1) Transplant absolutely necessary and fit enough to undergo the major operation (2) Transplant necessary but unlikely to survive the major surgery (3) Transplant not necessary at this time but further monitoring required. This will be decided upon at the weekly MDT meeting which will involve all the people who you will become so familiar with over time. Hepatologist, Transplant Co-Ordinator, etc etc. If you are put on the list you will be expected to stay alcohol free, keep yourself as fit as possible. If your time on the list is long you may be retested especially your heart. I spent 18 months on the list and had my heart tested at least twice. When I asked why I was told that was then this is now we don’t like surprises. Well I gave them the surprise of their lives. I haemorrhaged severely on the operating table and a reasonably straightforward transplant became a massive fight to save my life. The initial prognosis was 12 - 24 hours, then extended to 14 days, then won’t leave hospital alive, then maximum 6 months. Well I’m still here 2 years later, in good health (diseased liver excepted), looking forward to my 3rd cruise since this event and enjoying life to the max. I write a blog about my journey through cancer and it seems like you could benefit from reading it from the beginning. It’s raw, emotional, inspiring, thought provoking, true life experiences all of these are other people’s words. I wrote a blog in May 15 called “The Tests, Hope and a trip to Florence” which will give you my exact recollection of what was involved. It can be found at 1liver1life.wordpress.com.

Hope you read it and feel free to ask any questions that will help you demystify the whole process.

Ray

[Hidden]

Hi Catcher

I had my assessment at Queen Elzabeth Hospital Birmingham. I suspect pretty much all similar, mine was cerainly similar to identitiys except I had a one day assessment first (almost all day) where lots of tests are done (standard sort of stuff, bloods, ECG, Ultrasound, lung capacity checks, etc etc and discussions with transplant coordinator (very important!) - the latter assessing you as a person, how much vimto you drink etc etc) . At this assessment they decide whether to bring you back for a two day assessment. There’s absolutely nothing to fear at this second assessment - they are so friendly - well at QEHB they were, and I expect it’s the norm! Here we had about 6 potential transplantees each with a partner(except one) - they like (understatement) you to be with a partner/carer.

You sit in a room with drink and sandwiches etc for lunches (yum yum) and have a bit of a chat (!) and take it in turns to see (in no particular order) a dietician, an anaesthetist, a surgeon, a sort of psychologist (probes drinking habits, willingness never to drink again, etc - but it is NOT an interrogation), bloods, some repeat tests etc (I can’t remember them all). You watch a video — chill time 😁- then someone who has previusly had a transplant comes in and tells you about their experience. Ours was 60 but looked 40.! Retrospectively though he said something which, for me and another person in my ward post tp, wasn’t umm how should I say, umm wasn’t acccurate. He said he (note carefully HE (not heptic whatsits) HE himself 😁) had no pain at all from the tp. This was just not accurate in my case!

Anyhow at the end I was told that I would be put on the list Subject to another test - this I had but it delayed me getting on THE LIST for another 3 months. In my case it was a long long process, except once on THE LIST all over in 2 months - absolutely brilliant!

All in all not an unpleasant process at all.

Good luck to you both!

Miles

[Hidden]

Hi Catcher,

Have they booked you in for 3 days? They will run your husband through loads more test, CT scan, heart, running up and down stairs, talk to anethetist, surgeons, doctors, presentation from the coordinator etc. If he is not drinking, you’ll get listen. It is very tiring, both physically and emotionally but all being good, the listing comes through. Then the wait starts, endless obsession with phone charging, not going further than two hours from the hospital, regular appointments, CT scans, blood tests, heart scans, more up and down the stairs and so on. If he has a normal blood group, the call will come within the year and then the next phase begins.....good luck and remember, it’s a life saver.

[Yuiop]

I'm glad you asked this question, as my hubby is being referred to Edinburgh for 3-4 days for tests, we can all learn so much from all the replys. I thank you all.

[Hidden]

I hope you find comfort from all what these amazingly, awesome, people are saying. When they all replied to me, I went from a dark place alone, into a caring family type situation. Each and every comment gave me such comfort. I wish you well on your journey. I am listed at The Royal Free in London they are all great there.

Use this site as much as you can. It will help, you will know that you are not alone.

[peteingloster]

I was assessed and Tx'ed at QEH as well; honestly no nasty surprises they are truly wonderful people at QEH, if after the TX there are any problems they DO NOT let it pass they are on your case straight away, I have never felt better, I'm post TX 14 months now and fully recovered. You are bound to be frightened, it's only natural but it was the defining moment of my life and enjoying retirement to the fullest, all my regards to you and your family and the very best of luck to you, but wherever you're treated you will be in the best possible hands.