Has anyone been through the liver transplant assessment and can let me know what it entails etc. Thanks

[MrG5]

Would like to know what is really important in order to pass and also anyone who has had the transplant and can say what life is like afterwards.

[littlemo]

Hi there I had transplant assessment done basically it involves blood tests, mri scan of liver, breathing and exercise tests eg treadmill or bicycling. Out of all the tests I found the bicycling test the toughest as at the time my muscles were weak as had not been doing lot of exercise with having had a horrrendous year with extreme itch and chronic fatigue. All the exercise and breathing tests are to ensure you would be fit for anaesthetic and to undergo major surgery. So my advice is to try and get yourself as fit and healthy as possible before you go in for the assessment. I didnt need to go on list thankfully in the end but do no two women and one man who have had transplants and all are doing brilliantly. Best of luck.

[MrG5 in reply to littlemo]

Thank you so much for this. My husband is in hospital with naso gastric feeding to build him up so I am rushing about a bit at the moment. I told him about the replies and he is really grateful. Will definitely look at a trainer to help get ready for the bike test and look at URL given. Glad things seemed to have turned round for you.

[Hidden]

I had the same assessment as Littlemo. I had a transplant in January 2004 and, although it took me about 6 months to start feeling better I had 4years of feelin really well when a tumour was found in my kidney and the whole kidney had to be removed. Since then I have not felt as good.

[MrG5 in reply to Hidden]

Thank you so much for replying. My husband is in hospital with naso gastric feeding to build him up so I am rushing about a bit at the moment. I told him about the replies and he is really grateful. Will definitely look at a trainer to help get ready for the bike test and look at URL given. Wishing you well with the kidney issue.

[littlemo in reply to Hidden]

Hi Nannabn sorry to hear your not feeling so good rre the kidney problems are you getting any furter treatment for it?

[Hidden in reply to littlemo]

Nothing much can be done about kidney as my remaining one is very small and I only have 18% function. As I have no desease there is nothing to treat. Eventually it will stop altogether and I will have to start dialysis. The worst thing is that this has the same side effects as PBC so at the moment each consultant is blaming my symptoms on the other and I'm getting nowhere.

[littlemo in reply to Hidden]

So sorry to hear that Nanabn will keep you in my prayers. Take care and keep your chin up. x

[Hidden in reply to littlemo]

Thanks for your reply. At least my transplanted liver is still going well, although PBC was found in it 7 years ago no damage has been done yet. Urso is certainly working for me keeping any damage at bay.

[littlemo in reply to Hidden]

Well thank God for that hope the kidney keeps functioning you have beeen through enough Nanabn. Bfn.

[Magnolia in reply to Hidden]

I'll add you to my prayers also Nannabn. I believe the urso works also, as I've had the disease so long, and don't have damage.

[rachel-p]

Hi, I had my assessment done at kings hospital London in September 2011 and had my transplant there the following march. The assessment was as little mo said, I had been warned about the muscle loss though and the bike test so I joined a gym and with the help of the trainer there built up my muscles. Even though there were times I really didn't feel like going and towards the end couldn't I was told the work I did there really helped and I certainly made a quick recovery from surgery.

[MrG5 in reply to rachel-p]

With thanks for prompt reply. Definitely think a trainer is a good idea. My husband was always a regular gym member so I am sure we could organise something. Also useful to hear from someone else that you don't feel like it but it's worth it. How long do you have on the bike or is it cycle for 5 or 10 mins and they test your fitness?

[rachel-p in reply to MrG5]

I had to go on a stationary cycle just like they have in a gym and then they set it at zero resistance and gradually increase it until you can't cycle any longer. While I did this they measured my blood pressure and oxygen use. It sounds harsh but was ok, the training I did definitely helped. Good luck with the assessment x

[sistergoldenhair]

MrG5, I think if you click on the web address I included (uwmedicine.org/Patient-Care... you can go to the University of Washington Medical Center) it will take you to a page where alot of your questions can be answered. There is also a video of a lady who had PBC and was diagnosed and had to have a transplant, she tells her story and it's really awesome. I have watched some of the videos and stuff because this is where I would have my transplant. I have met some of the docs and they are all very nice. It sounds like you have some great advise/experience from the responses above. thoughts and prayers, cyndy

[MrG5 in reply to sistergoldenhair]

With thanks. Will definitely look at this link. Sounds brilliant. Wishing you all the best and that the transplant comes soon for you.

[Shellbear]

Hi, I went through the transplant assessment and had my transplant nearly 3 weeks ago. I found the assessment process very thorough, I didn't have to have a bike test but did have lung function tests, several blood tests, ultrasounds, CT scans, dental check up, chest xrays, and an endoscopy, I'm sure there were others too but my brain is a bit cloudy with all the medication I'm on so cant remember. As far as the transplant is concerned, its a little early to say how much better my life is having said that I don't have the symptoms that I had before, severe body aches, jaundice, severe tiredness and itchiness. I'm not going to lie and say it was easy to get through, however I was determined to get out of bed as soon as I could, which I did and definetly helped with my recovery. At the beginning I couldn't see any light at the end of the tunnel but each day I did get stronger. I did have acute rejection which was frightening, but the doctors sorted it out pretty quickly and they were fantastic. If you want my email address your more than welcome if you want to chat through anything just let me know, take care and the best of luck with everything x

[MrG5 in reply to Shellbear]

Hi Shellbear my husband would be keen to talk to you. Sorry for the delay in getting back to you he has been in hospital for some NG feeding and also a drain as his ascites got very large and affected his breathing, Then we had computer problems but up and running now. We just got a letter last Friday to come to Kings tomorrow for the liver transplant assessment. So if you are around today tomorrow morning then we would love to set up a chat. My husband's email is [e-mail]. Our consultant told Peter this week that his liver enzymes might not be bad enough. Not sure it that's good or bad really but interesting nonetheless. We will be at Kings either until Wednesday or Friday next week. If not convenient to chat before we would still be keen to talk after the assessment. Look forward to hearing from you. With thanks

[littlemo in reply to Shellbear]

Hi Shellbear was just reading your post and wondered how are you doing now?

[Jackie71 in reply to Shellbear]

Could I ask how are you doing now and if you were working before when you will go back there appears to be very little information on life after the transplant.

[florrie505]

Hi Shellbear,

The tests I had at Leeds hospital were :-

CT scan, MRI scan, Xrays, Various blood tests, urine analysis tests. The usual observations of Blood pressure monitoring, Pulse, Oxygen statistics, Respiratory rate and temperature. I understand that the tests are done to indicate your level of fitness to establish whether you would be a suitable recipient and also assess how many precautions need to be taken if any during recovery. They gave my vitamin D via Intravenous transfusion and calcium supplements whilst I was an inpatient as the tests take up to 4 days.

Must start by saying do not be frightened and worked up as they are a series of tests and nothing is determined until after the Doctors, Surgeons, anethes...etc. and the whole MDT team get together and discuss what is the best action to take for you. They discuss each individual patient separately as we all have individual health needs. After the MDT make the decision, a liver specialist nurse will give you a call and give you the news which will be either that you definitely need a transplant or that you don't. You are then invited to a 3/4 hour meeting with a specialist nurse and I luckily got the head consultant of the Hepatology team to explain a few things. Luckily, my tests indicated a that I would be a suitable recipient for a Liver donation. I was given time to think about whether you want to be on the uk waiting list or continue.

Initially, I was very stressed, anxious and worried about the tests but I now think, why? There are no right and wrong answers as everyone is based on an individual basis.

I hope you get the outcome that you want at the end of the tests.

Good luck xxx

[littlemo in reply to florrie505]

Hi Florrie did they tell you when you went on the list how long you would expect to wait b4 you could be called for transplant? I no its based on blood group but just wondered what the transplant waiting list times are. Hope you dont have to wait too long. x

[florrie505]

Hiya LittleMo,

I was cheeky and asked how many were on the waiting list for Leeds (northwest area) and they said 15 but I all depends on greatest need and match which will depend on who gets the call. Luckily I am a+ positive which means I have a better chance for a match. I was added to the list in June, 2013 and awaiting the call, frightened to death and also on the edge every time the phone rings. They said Ive got 8 months approx. therefore I need one soon xxx thanks for your message