Hi, I'm new here and looking for advice. My partner is having an assessment for his suitability for a liver transplant next week. I am going with him but we don't know what to expect, i.e., what tests do they do and also by telling them all the problems he has but not making him sound beyond help (his gastro guy said the hospital will 'pounce on' any excuse not to put my partner on the waiting list (ie heart probs etc). Any help/advice would be much appreciated. Also any advice for me as his partner coping with this. Thanks.
Liver Transplant Assessment appointment - British Liver Trust
I agree with everything Freddie said. They just need to ensure a transplant is the right option and that your partner is physically and mentally fit to undergo the operation.
Although each centre is slightly different the transplant assessment is very thorough and as others have said it is about seeing if you hubby is at a stage where a transplant is necessary (i.e. is his liver poorly enough) and is transplant a suitable treatment option and they have to ensure that he is fit enough to endure the procedure and the lengthy recovery period post op. They do have to rule out any contraindications too - like heart, lung trouble, stroke risk and any extra hepatic cancers. They want to maximise the life of the patient.
My hubby was assessed at Edinburgh in 2014 & apart from being in for the tests I was there for all the discussions (as hubby has issues with concentration and making himself understood & understanding others).
The type of things he had to have were - swabs for MRSA (nose and groin), CT scan, endoscopy, blood oxygen level, loads and loads of blood tests (daily), lung function tests (many), heart scan and CPET (bike test - riding a static bike whilst heart and lungs are thoroughly monitored whilst under stress), lots of discussions with transplant co-ordinators, consultants, surgeons, anaesthetist, dietician, sometimes social worker, psychiatrist. It was a full on 4 days and at Edinburgh we got the listing decision on the Friday afternoon following the multi-disciplinary team meeting.
I posted a day by day account of our experiences on Healthunlocked which is still there at:- healthunlocked.com/britishl...
Best wishes for the assessment, hope all goes well.
Royal Free do it different from other centres, there are members who had their T/P there.
It's probably an initial day to start and then further dates although has your hubby had tests locally? Sometimes I think Royal Free co-ordinates local tests and they get fed into Royal Free so it doesn't all have to be done there.
All the same tests will be done though.
Have they actually said this is him going for transplant assessment? OR have they just referred him to the Royal Free for consideration for transplant assessment.
Often they refer your first and you go and have an initial consultation and after that they might take over hubbies care or indeed consider him for the full transplant assessment.
If he hasn't had many tests to date they will no doubt order many or make arrangements to have him in for assessment.
Take a list of hubbies symptoms, his health history, current meds and any questions you want to ask. It sounds like this might be the initial consultation rather than full on assessment.
Its now getting more common to do the Transplant Assessment as an outpatient. That process is done over three days but in two separate blocks. The first block is just one day where the process is explained, you're partner will give shed loads of blood and will do the initial scans, chest x-ray and usually an echo cardiogram and an ultrasound. They'll also do an initial lung test too, probably a blow down a tube type of thing. Although i did mine during the second block as I still had a bit of fluid on my lungs after a bout of sepsis a few weeks earlier.
The second block is a two day affair where they go into a bit more detail about the process, what you should do and what you should expect. Its also a further opportunity to explain what may be required of the people looking after us together with advice for them too. You'll meet a hepatologist, a surgeon, an anaesthetist and a dietician and they will go through things with you too. They will ask you lots of questions but will also be really happy for you to ask anything of them. Your partner may also have any further scans and tests they think may be necessary. After the second day of that block you'll go home and they will contact you or your partner a couple of days later with the decision about whether to list or not.
They do still do the 5 day assessment for in-patients if required, but i suspect the outpatient assessment is becoming the method of choice.
You've also had some good advice from others about what to say. Your partner needs to be honest with those doing the assessment. They're going to need the info anyway so they can plan accordingly. You'll want them to have everything in place ready just in case. Treatment after can also differ depending on co-existing problems. The medication approach can be quite different. So its important they know.
Hope that's helpful.
I happened across this and it reminded me of all the tests I had been through. I’m sure my brain was addled a lot of the time before t/p.
The one bit i did slightly differently from you hubby was I didn’t do the bile test because I couldn’t. Instead i had a
myocardial perfusion scan (Had to look it up lol) - where a small amount of radioactive substance to create images which show blood flow to the heart muscle. The test can also be known as a thallium scan, MIBI scan, technetium scan or nuclear medicine scan. ... plagiarism rules OK 😀
Just for mild interest. Yes and i know you know all about it lol.
Knowing what a journey you have already been on to get to this point, you must be having mixed emotions.
Happy but fearful; happy because you have been given the chance of a lifeline and fearful that you might not get what you want.
There are many here including myself, who have been through what you are having to endure, and that means both of you.
The partner, too often is forgotten, I know for a fact that apart from my donor, gastroenterologist / hepatologist , transplant team, without my partner there every step of the way, (now wife) I wouldn’t be here today.
There are strict criteria to be listed for a transplant and they are the same for every transplant centre in the UK ( of which there are seven)
Generally, they must be convinced that the individual has no other existing illnesses / conditions that could result in a survival period of less than five years.
Therefore the tests will ensure that you are ill enough to warrant a transplant but well enough to tolerate what is major surgery. This is why the success rate is incredibly high both for the surgery and immediately post operatively.
There is nothing to be concerned about, I was extremely unwell during the testing period and worried abut being able to physically endure such things as the treadmill / bicycle to measure cardiac health and the tests for lung capacity. I am clearly here to tell the tale.
My friend who was transplanted last week was carrying a lot of ascites (fluid in the abdominal cavity) and was very easily tired. He was convinced he wouldn’t be selected for transplant but was given the positive news a few days afterwards. He waited three weeks for his transplant (still in hospital recovering) and my wait was two weeks.
So there is a very real possibility that he could find himself with a new liver for spring.
You should be given a timetable for the assessment period and you will have support throughout the process from the transplant team and especially your transplant coordinator.
Be prepared for a very busy and tiring time, but nothing unbearable.
You should both be fine.
Have a look at the following link on the British Liver Trust Website – you should get a few hints form there about what to expect.
In the meantime, don’t worry and keep us informed of how it went for you both.
Jim and Lucy
My Husband is going through this , with the Royal Free at the moment , but missed his last appointment due to being in hospital , but thankful that are re sechduling, but your posts have reassured me that he still has a chance of getting on the transplant list , even how poorly he has been over the last couple of months.
If that should happen again, you can ask for hospital transport between hospitals. I was an in-patient at Whipps Cross hospital in East London with an episode of hepatic encephalopathy, to ensure I was at the transplant clinic for my appointment they arranged an ambulance with a nurse escort.
Obviously that wasn't too difficult as the hospital was in London, but you can still check if it is possible from where you are.
I agree with what you have already been told, The transplant assessment has to be robust to ensure the best outcome for all patients. I have cirrhosis and when I finally decided I would go on the transplant list I checked my score and discovered that I’m now too well! But that’s better than being sick enough! The assessment is the same at all UK transplant units. Be completely honest with the team, you don’t want to decrease his survival chance. Good Luck
The whole point of the assessment is to determine if the patient is strong enough to take the undoubted strain that this huge operation puts on the body. As well as all the tests there is also a “family” meeting, where they try to outline to your family members exactly what they should expect if you are fortunate enough to receive a new liver. During the tests you will be evaluated from tip to toe and you may well be surprised at some of the outcomes. For my part imagine finding out that you had the heart of a 21 year old, this despite years of abuse, a long period of morbid ( I hate that word) obesity. Years of alcohol abuse was 12 years sober when the tests were done. At the family meeting we were told that we should get all of our affairs in order regardless whether we were put on the list immediately, to be reconsidered as we were not “ ill enough” or not even considered as we were too unwell.
That is great advice and is one thing less to be worrying about.
For me they had to abort the transplant, and I am convinced that the strength of my heart allowed me to pull through even though the medics didn’t hold out much hope.
I was/am being treated at The Free, do you know who you will be seeing.
I wish you and your husband all the very best and hopefully he is suitable for transplantation.
Hi my husband had his assessment in June 2017 at Kings and it only took 1.5 days. He has COPD and a host of other problems. Initially he was refused due to a large blood clot so was put on Warfarin and in October 2017 he was assessed fit for transplant whch he then had 3 weeks later. We were honest about all his problems and they were so helpful.
Good luck hope all goes well x
Hi, I am so sorry that he is deemed not well enough to undergo the operation. It is not the end of the process, my own story tells you that. Given anything between 12 - 24 hours to live in Nov 16 - Still here, if anything better than I have been health wise for many many years. Met my Professor yesterday and we are now dealing with small areas of blush on the liver, which are areas that are not tumours but could in time develop into tumours. When asked why my liver is performing well, he smiled and said “we definitely didn’t expect you to still be here. The fact you have lost weight may have also taken some of the fatty elements away from your liver, and your liver may have more regenerative power than we thought it did, we expected it to just deteriorate instead it’s just got better and better” I have found the key to this begins with a positive attitude, followed closely by healthy living as best you can. Avoid fatty foods wherever possible.
Don’t give up, keep working when everything feels stacked against you, remember you are not on your own.
Thank you. Steve has a lot of muscle wastage. We saw a dietician and he has been told to eat protein rich food. Also got new tablets which are supposed to help with the confusion etc. He also has leg ulcers which leak so he would be prone to infection if he underwent an op. But she hasnt said never so he gasnt given up hope!