British Liver Trust
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Not sure

Hi this is to see if any of the regulars have a thought on this. My hospital the Royal Surrey started doing referrals today for the Royal Free. Two Consultants came down from the free together with my consultant I was the first to be seen on this new listing. Anyway I was with them for about an hour and answering questions they need to know about my history cirrocis etc. At the end of it all they said before I can go forward for the usual testing for the listing I have to have tests on my heart lungs blood flow brain scan eeg ecg MRI ct and bone scan to see if I'll make it . They said they were concerned at the moment about if I was well enough to get through a transplant. So this is where I'm not sure as if I'm not well enough then surely that would be the reason for having one or have I read this all wrong . That did say I'd have to have a strong heart and lungs but on the other hand if my hepatic encealopathy was quite bad and my fluid retention etc was not good then this would be a reason for having one I'm very confused and don't know what to make of it all. They were very nice and have given me hope it just seems to be a strange situation to be in to well or not well enough . Also I have chronic pancreatitis and they didn't seem to like that being in the mix either and a bone density scan because I'm lacking calcium in the bones. Thanks Bri.

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Assessment for transplant is really in two parts (1) is your liver health so bad that you are actually at the point you require transplant - yes your HE, ascites and things would point to it probably being needed as you are showing advances symptoms and (2) are you actually fit enough to endure the procedure (10 hours of surgery in some cases) plus the lengthy post operative recovery period.

The 'fit enough' bit includes the tests on your lung and heart health - heart stress test, lung and breathing tests as during the op you will be on oxygen and obviously under a general anaesthetic. The liver surgeon might want to give you the surgery but if the anaesthetist says no i.e. he/she feels that you won't survive the operation it is a no. The MRI and other scans are to make sure you don't have anything else going on elsewhere in the body that would make transplant too risky or not give you good survival chances - this can include multiple cancers in the liver or any extra hepatic cancer. They will want to ensure you have enough 'reserves' in your body too, malnutrition can be a bar to transplant as you won't have the necessary reserves to get you through the procedure though as part of the assessment a dietician is usually involved and they will know the best ways to bulk you up and build you up prior to transplant. Assessment looks at your social situation, support network, your overall health and loads more.

It's the best MOT you can get, full body tests. During my hubbies assessment they discovered that his portal hypertension had caused multiple aneurysms in his splenic artery - they certainly never expected to find them but thank goodness they did as a bleed from one of those would have been fatal and thankfully having found them they did a hurried embolisation procedure so he could then be listed (even though he was eventually delisted 10 months after because he wasn't poorly enough to meet the criteria any longer).

Hopefully they will get you in for assessment and you can see where you go from there. As I say it is the best MOT you will ever have.

If you want information about the process, here is a link to the patients leaflet we were provided at the Scottish Liver Transplant Unit. nhslothian.scot.nhs.uk/Serv...

It will be a similar process at all other centres even though the assessment layout differs slightly (at Edinburgh its a Tuesday - Friday inpatient stay with the decision meeting and decision made and told to you on the Friday afternoon) I know other centres do it slightly differently.

Wishing you the very best of luck.

Katie x

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Thank you for your reply I can understand what your and the hospital is exsplaining and I agree on all counts with you I just wish I'd of had the second lot of tests and team first rather than second but I do understand it's to find out if I've got anything else going on. Just seems an odd way to do tests once then again later also Katie thank you for the link I'll have a look tommorow. I do know they've gotta look at my spleen as well as it's rather large with the portal hyper tension many thanks hope alls well Bri. Xx

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They do the tests side by side - some will be checking liver some everything else. They just have to make sure you are fit enough for transplant and that you have a reasonable post op survival chance. It is a major op and they will not put someone through it who doesn't need it (yet) or who isn't likely to get through it or perhaps has something else which rules out transplant.

I do wish you all the very best. A large spleen with advanced cirrhosis is absolutely normal - post transplant it should shrink back to normal size and they probably won't touch it / remove it unless they absolutely have to as it forms part of your immune system - my hubbies spleen has died now following the embolisation and he has to take penicillin v for life now.

Katie

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Is he allowed to take probiotics then Katie? Xxx

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I hope he's fine your husband and feeling ok so he didn't have a transplant in the end. Xx

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Gosh Katie thank goodness for the tests on your hubby xxxx

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I had my transplant with the Royal Free and before my listing was told that they may not put me on the list because I have other medical issues and have had major abdominal surgery before the transplant making surgery very difficult. However I had my workout plus additional tests requested by the anaesthetist and was put on the list. I had my transplant 4 weeks later. The doctors have to make sure you're fit for surgery and that you'll survive the aftermath of the surgery. With regards to malnutrition make sure you take the usual supplements enjuice, ensure etc... please don't be despondent the doctors are trying to do their best for you. They have to lay out the bare facts in case they think you're too unfit for surgery. The surgery is pretty brutal to be honest and I can say that having had a bowel resection, my gall bladder removed and a splenectomy. Good luck. Look on the positive side. You're going for the workout and they wouldn't do that unless there was some hope

Anna

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Thanks for that Anna you did go through the mill. My self I'm just trying to work it all out I understand they have to do an assessment to make sure you can cope the surgeon said it was abit like running a marathon so a good way to exsplain it . The one thing I don't understand is they've put me up for said testing at the Royal Surrey then in three months I'll see them there again to see if I have any major issues that need dealing with if so they'll be sorted but then if I'm ok I'll then go to the Royal Free to have there assessment for three days . This is what I don't understand why not just do it all in one go at the Royal Free on the assessment then than doing it this way or am I just being abit thick or missing the point so to speak Bri. Xx

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I saw some very poorly people with HE, fluid retention and very high bilirubin levels and they got their transplant. The tests will check for any other conditions that may make a transplant more difficult so the surgeons and anaesthetists have every bit of information to help them. Any conditions that need to be sorted e.g. Oesophageal varisces can be banded will be done. Because the surgeons knew I had a tendency for blood clots they knew to check after my transplant and were able to treat a blood clot I had after transplant surgery straight away. I am trying to reassure you as I understand how awful this is for you. One thing I will say is that patients were referred to the Royal Free because they had liver failure and got a transplant without being on the list prior to coming to hospital because their liver failed so drastically. This time last year I was at your stage and now I am healthy and making plans for my life.

Keep strong and if you feel unwell get yourself to A&E as soon as possible that is something you must do so the doctors can help you

Take care

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Thank you for your reassurance and I'm glad your well now. Xx

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Yes some good advice on here. As everyone says it's routine to do all the tests to check for other medical conditions or that you're fit enough.

My advice is to take it all one step at a time! If you hit any issues then work on that and get it resolved if you can. I found the whole ordeal very stressful and did have a few setbacks requiring bone marrow biopsies. In the end all went well and I got the transplant I needed.

I think consultants deliberately play down your chances of getting on the list. They are simply managing expectations.

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Thank you so it's routine to do it the way they're doing it before the other assessment??.

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Not exactly but it might be because you are not based at a transplant unit. I had a week of tests, both testing my fitness as well as my need for transplant. They were done in the same week and concurrently.

Perhaps, and this is a guess, because they would be moving you to Royal Free they are doing some checks in Surrey. I really don't know. But I had a week in Kings of bloods, ecg's, exercise (on a stationary bike), lung, x-rays, urea and MRI. Possibly more that I've forgotten.

I really wouldn't worry what order they do them in. What I would say is that I found it highly stressful and after the week was still left with extra tests needed resulting from the initial ones. So I had to approach it as one hurdle at a time. And after a couple of weeks I was on the transplant list.

I hope it goes well!

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Thank you for your explanation and I'm glad your ok now.

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