What does the 5 day liver transplant involve for my husband
Sorry, I don't know, but I'm sure someone will be on soon who will have some information for you.
It will be the 5 day assessment at the transplant hospital. If the hospital where he has been treated have deemed him ‘well’ enough, this is the next stage. They will run all the tests and talk you both through the process. It is both physically and emotionally draining. All being well, as the majority of cases are, he will be listed. From here on in, as before, compliance is everything. I wish you the very best on the next step of this journey. This is for life, in both senses.
Mark, I am always hearing abou tbe assessment times for Livrr Transplant and they always seem to have been muck longer than my own assessment. I was assessed over 2 days and was not hospitalised?
Thanks for the clarification, I did understood the first time but felt a general clarification was required, you never know lol 😂
It varies from one hospital to another regarding how many days and often what tests are carried out. In my experience you do not need to be hospitalised for it unless your health dictates, although I was first assessed at Kings and due to the distance from home was put up by the hospital in nearby beds it’s they own for exactly that purpose.
The clue is in 5, mine was 3. Put up in a local hotel. Have you been listed and gone onto transplant? I wish you every success.
Hey up chuck, I mean Mark 😁
Mine was 1 day, wait a month, then 2 further days. Stayed at room in hospital compound but had to pay! QEHB.
To be honest Mark We didn’t find it physically or emotionally draining - but obviously that’s an individual thing and is contributed to probably by the staff of the day and your other patients’ approach. We had quite a few laughs 😁. I did, however, fall asleep during one of the “tests” 😁
Miles, sorry I meant Milo, I saw from Agnes that Edinburgh was 5, mine was 3. I’m not sure if it was the hospital or the wife that wore me out.
1 what a bonus. Good to see your not back or should I say welcome to the forum lol 😂.
Edinburgh is 5, where was yours? Mine was 3 days at the Royal Free. Type B, 19 months 😥.
2 days at Kings. A + , 5 days.
Hi, my 1st assessment was 5 days at Edinburgh, my blood group is B negative and I was 10 weeks on the list 😀😀
More Celts have B’s, nice one Kate.
My hubby had a 4 day assessment at Edinburgh in 2014 and I detailed each days tests and converstations in a thread at :- healthunlocked.com/britishl... The assessments as others have discussed do vary from centre to centre depending on what input the transplant unit have already had with you. Sounds like your hubby is getting the full works in 5 days.
Tests will include :- Bloods (lots and lots covering literally everything going), arterial blood gas, CT or MRI scan (to check full body for anything scary outwith the liver), full range of breathing tests to check lung health, some form of liver/lung stress test - this can sometimes be a stair climb, exercise bike or treadmill (whilst hooked up to all sorts of monitoring equipment) or in some centres they do an stress test using an adrenaline injection which stimulates the body into the same sort of stresses as exercise. If there hasn't been a recent endoscopy done then that gets done too. Dietician exam - weight, muscle mass, current diet and any dietary needs.
Discussions :- Everyone will spend lots of time discussing all aspects of the listing procedure, the wait, the operation, the RISKS, examining support networks etc. etc. Depending on centre this will often include discussions with consultants, surgeons, anaesthetist, transplant co-ordinator(s), social worker (perhaps), psychologist.
If you are able to be there you can take part in every stage of the assessment discussions (obviously not the medical tests). You are a major part of this process so hubby will need your support and you'll both need to know what all the procedures are etc. I was there every day of hubbies assessment.
The whole point of transplant assessment is to establish (A) is hubby at the point of requiring liver transplant? Have all other treatments been tried and eliminated and is his liver now poorly enough that liver transplant is the needed route. (B) Is hubby actually fit enough to under go the procedure and recovery - has he enough body reserves? i.e. not malnourished to the point he has nothing left, are his lungs and heart fit enough to endure the massive stress of a potential 10-12 hour operation and subsequent use of bottled oxygen? Does he have any other conditions that might contraindicate for transplant - certain liver cancers if over and above a certain size or number can rule out transplant, cancers other than in the liver will rule out transplant. Mental ill health, lack of support networks where the patient might no cope with transplant - these are all explored.
At the end of the 5 days the multi-disciplinary team sits down, thoroughly goes through every test result, discussion, examination done and come to a decision. List or not list or have to do something in between before listing can be confirmed. I.e. extra dietary help to try and build them up might be needed. In my hubbies case they discovered several aneurysms in his splenic artery during t/p assessment these had to be treated before he could be listed or else during t/p op he could have had a massive fatal bleed. He was listed once that was done.
It's a full on week, tiring and brain taxing but if the result goes your way and listing is deemed appropriate you should be told there and then.
Anyway, a long post but hopefully it's helped fill in the details.
Edinburgh provide patients with the following leaflet at assessment which details the whole process - services.nhslothian.scot/sc...
Their web page also has the information for clinical professionals which actually details in full the clinical protocols for transplant assessment and listing. services.nhslothian.scot/sc...
All the best to you both and good luck.
Hi Katie , happy New year to you! I did PM you last week I think?
So .. sorry to butt in 😁. just wanted to ask , yes i may be thick here lol, where you state in QA ..is hubby at the point of needing a transplant? is this an actual part of the liver assesment? . Only i thought that once you were at that point of being referred you are already deemed needing a new liver
Love linda x
Your own consultant might think you are ready for transplant, hence the reason they refer you for assessment, however, transplant assessment might actually suggest other steps to try that a local (non-specialist) centre may not have access to. Even at assessment they might not think you are actually poorly enough Where the potential risks outweigh the benefits they won't list. In a way that's why my hubby was delisted - as he stopped being 'ill enough'.
Never got a PM by the way.
Oh i see , now I understand it .. I was just a bit confused, I've just checked my messages and i have sent the pm to a different Katie 🙈🙊no wonder !!! Oh poo ! Lol
Hi consultant has looked at all his previous tests from previous hospital from where he got referred and thinks he will need one so wants the assessment stage to decide
Thank you for that info , keeping my fingers crossed
This was so helpful and has answered many of our questions. He is under addensbrook in Cambridge which I hear is a good hospital. How is your hubby doing ?
his was so helpful and has answered many of our questions. He is under addensbrook in Cambridge which I hear is a good hospital. How is your hubby doing ?
At Edinburgh it’s 5 days (Monday-Friday) as an inpatient where numerous tests including scans, bloods and physical will be done to ascertain if you’re fit enough physically for transplant. You will also have several consultations and discussions with the team to assess if you’re psychologically prepared for transplant. There is a lot to get through but you will be supported and by the Friday evening they will let you know if you’re listed. Good luck xx
Thanks for info
You’re welcome. I notice Katie has written a brilliant post detailing precisely what happens. She’s really good at sharing information which is so helpful to many of us on this site. All the best xx
Funny assessment story to cheer you all up (sorry if you've heard it before)
Similar to Mark we were put up in a nearby hotel - five minute walk (10 for people with end stage liver disease). Having had it made completely clear about the importance of being on time for every appointment for the duration of the assessment, we got up nice and early. Lucy works so she went to her job having made sure I was awake and ready.
Decided to have a bath to be nice and fresh for all those intimate examinations. All went well until it came to getting out of the bath. For those with extreme muscle weakness, what happens next will ring true. I didn't have the strength to get out ! Mobile phone ? - in the next room.
To cut a long (and cold) story short. It took me an hour to get out. All my plans for being nice and early went out of the window, or should I say - down the plughole.
I can smile now, but at the time it was not my brightest moment. However, almost three years later with my new liver, bright new life and future, it was all worth it.
Hope all goes well with your assessment (have your bath the night before).
Can relate to the bath story! lol. Can't wait for my first bath for ages. Got to get a bit stronger yet! Glad that you are now doing so well. Alf
It was also a novelty to be able to get out of a low chair without a struggle.
Getting out of any chair without a struggle will do me! lol. It will come I'm sure.
So funny made us chuckle
Sorry Jim, I know I shouldn’t have, but that made me laugh so so much. 😁 But oh heck the frustration- how awful. Bet you had horrible repeating dreams about it....
I haven't as yet been referred for transplant but found all this information very helpful for when I am referred. Thank you to you all. Love and hugs Lynne xxxx
My husbands assessment was 6 days ( we got the call on Saturday( and he had 1st scan that night to) and came home following Friday) and he was at QE so it’s different for each patient and some tests some won’t have because it’s streamed to you and your condition.... my husband had tests every day all tests were explained to us he stayed on ward 726, I booked in to 1st a hotel then Nutfield house (relatives Accomodation very cheap). After multidisciplinary meeting they came and explained my husband fitted the criteria for going on the list but needed to look at and receive more advise on his hepatic vein ( he had a clot) they said it could take weeks, they rang 11 days later on the Tuesday to say he’s been listed and was now active..... he was classed as urgent and his only chance was a DBD donor ....the emotions this itself bring, are heartbreaking really ..... we were very lucky the following Wednesday we got the call, we got to the hospital at 4am it’s a 2 hour drive for us, my husband didn’t go down for surgery until the Thursday a 24hour wait in which your sat there completely numb, knowing you just have to wait that someone family are saying goodbye and giving you the greatest gift ever .... very hard mixed emotions.... so on the NHS celebrations day at 4.30am my hubby had his liver transplant 5.30 hours in theatre which was amazing 10.30 am in high dependency and I got to see him around 11.30 .... it was amazing.... he came home 8 days later and is now nearly 6 months post transplant doing amazing..... sadly because his kidneys were renal before transplant a complication of when his liver Decompensated (he had Nash fatty liver disease and non alcoholic cirrhosis and alpha 1 ) they haven’t recovered and it’s now looking lik a kidney transplant but although he’s not fully recovered and still very tired and can’t walk far .... his liver is doing ok .... so looks like a longer recovery road for us but he’s doing it all be it slower xx
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