Hmm! When my varices erupted back in may and I was subsequently diagnosed, the consultant said "Child Pugh 'A'" score, A few weeks later, he said that they don't use that anymore and now use the' MELD scoring system, mine was 10 and I wouldn't be referred to QE hospital Birmingham yet. Had a letter yesterday saying that they now use the UKELD scoring system of which mine is 51, so I'm to go to QE hospital for transplant assessment. I feel fairly well at the moment. 3 scoring systems in 4 months doesn't help to simplify matters. Still, good news I suppose.
My husband and I have never been told what 'score' he has on any of the score charts - he was put through the liver transplant assessment in June of last year when we were told he was borderline as requiring transplant but they did put him on the list (the minimum UKELD score for transplant list is 49) so I guess you too would be borderline at 51 especially if you currently feel well and your symptoms are under control.
My hubby spent 10 months on the transplant list living with all its restrictions and then owing to a slight improvement in his blood test results and the feeling he was stable at present with his own liver 'holding its own' he was removed from the list.
It is worth going through the assessment just to get a full and thorough physical exam and practically every blood test and scan going but if you are doing well at the present time with few symptoms i'd be prepared (perhaps) to be either not listed or listed and told you are in for a long wait.
As we have seen on the forum recently with various posts - liver transplant isn't necessarily the golden ticket to a wonderful new life, yes it is for some but for others it doesn't necessary give you your old life back. It is seen as a last resort, if your own liver can tick along alright doing most (albeit not all) of its functions and you are in no immediate danger then it'll (like I say) be a long wait or a not at this time decision.
My hubby has gone back to his regime of pre-listing i.e. 12 weekly check ups at the transplant clinic with blood tests and his 6 monthly ultrasound scans & checks on his varices (although after 42 bands his are currently eradicated) and we just have to wait to see if he deteriorates further and he possibly gets relisted.
In the interim we are absolutely making the most of life as we can even with a dodgy liver, we just have to adapt and do things when he can.
Just to get your various scales in order - Child Pugh A is the least serious of A-C and survival in year one is 100% and year two 85% (approx). MELD originally worked out the mortality rate within 3 months for a hospitalized patient who had undergone a TIPS procedure and a score of 10 would indicated 6% mortality rate (MELD is used in the USA for working out the priority for transplant).
As I said on the UKELD scale 49 is the minimum required for listing for transplant in the UK so 51 is definitely the lower end of that scale. This is ignored though if there is other urgent need for transplant such as a liver tumour etc.
Best wishes for the assessment, like I say even if you don't get listed at this time the docs will have had a very thorough look at you with all the various tests - it was good for hubby because during his they discovered that his portal hypertension had caused multiple aneurysms in his splenic artery (this was discovered on his CT scan during the assessment and wasn't known about before).
Interesting reading what you say Katie about the assessment as my husband (meld score 15 given by our local gastroenterologist) is coming to Leeds next month for tx assessment and we have no idea what the outcome will be. As he is keeping very well and not showing symptoms from his portal hypertension and varices it's quite possible then he will be consider too fit to be listed like your husband. Like you say it's good he will undergo all the tests and if there are any hidden problems we will know.
Leeds told him his weight needs to be reduced so he is concentrating on losing weight and keeping fit.
Don't know whether I want him on or off the list. If they say not on list its still messes with your head as of course he is still ill and it doesn't mean things are getting better 😥 If he on the list then that's scary too- at least we under the care of the specialists.
Totally agree with that dilemma Katherine1962, we were gutted when hubby was taken off the list as perhaps wrongly we'd seen it as the light at the end of the tunnel. Hubby is still ill, has only one good day in goodness knows how many. We were told they don't do 'quality of life' transplants when fatigue is the thing causing the poor quality of life since transplant may not indeed get rid of the fatigue ............ there are no guarantees with transplant! At Edinburgh we've been told hubby is far better keeping his own liver whilst it is still going sufficiently - his varices are eradicated, the splenic artery embolisation he had after they found the aneurysms has caused his spleen to die so it's improved his blood count and negated some of the portal hypertension, he has no ascites, some minor HE symptoms (being treated with lactulose & rifaximin). His cirrhosis was due to Auto-Immune Hepatitis which we never even knew he had till all the damage was done and this is 'burned out' so not active and not currently causing further damage.
We just plod along, living life the best we can, my folks helped us buy a new caravan so we can hit the road and even if it means sleeping in a different place at least we get a change of scenery.
We just hope that when/if his health does deteriorate his listing is somewhat straight forward and he gets his chance.
What they decide at the transplant assessment is (a) is transplant necessary - do the benefits outweigh the risks? (b) is patient fit enough to undergo transplant i.e. no other health issues which would cause risk during surgery and/or hinder recovery plus they prepare you for life on the list etc.
Definitely worth the very thorough health check.
My hubby actually had to gain weight post assessment - he was first off put on a high protein/high carbohydrate eating plan and this was topped up with 4 ensure supplement drinks a day. Hubby has always been very lean and active - 8 1/2 stone max on a 5 ft 5 (or so) frame. Now tipping the scales at 11 stone - surgeons wanted him 'overweight' to fuel recovery. It has cost a fortune in new clothes - 28 waist since school to now a 36 waist.
Best wishes for your hubby's assessment, hope it goes well and you get whatever outcome you want though don't treat it as light at the end of the tunnel. Transplant will be a last resort treatment to save his life. Hope that doesn't sound too gloomy.
All the best, Katie xx
p.s. I know that each transplant centre does the assessment differently but if you scroll back through my posts you'll see the big long week of posts I put on when hubby was having his assessment so you'll see what we went through at Edinburgh. Definitely ask if you can be there most of the time if you are able, I was there every day and it was only during the actually tests and scans that I couldn't sit in. Was a long week, not quite as full on as we'd anticipated but the long walk to the decision room on the Friday afternoon was awful.
Hi Katie , thanks for your advice .very helpful. I have read your post about the assessment day in Edinburgh so gives me a good idea what to expect..apparently the decision is discussed at their MDT meeting where all the doctors meet up and discuss the results etc and then they ring you a few days later to let you know the decision..maybe less stressful than getting told after two days of tests.
I like your advice about living normal life..since my husband diagnosis he has been working full time and is coping very well.. I went to my usual coping strategy of Googling every bit of info but glad I have found this forum as its full of useful and helpful stories and advice...Google sites tend to more scary than anything so pleased I found this one and grateful for everyone's replies.
Will update you when we have had the assesment and know the decision of the excellent doctors at St James hospital
Like I said they do things differently at all the centres. Edinburgh was Tuesday to Friday - all the tests done before Friday morning then they all the professionals got together early Friday afternoon for their discussion and we got called about 4pm to go down to a wee room to get the result.
Many thanks for your response there Katie. Hearing the experiences of someone who has been through a similar is so supportive (not that I'm happy that you've had a similar experience, that would be dreadful). Your feelings about hubby's changes in prognosis are interesting, we need to ensure that the Doctors (not the GPs, I've long lost faith in their ability) are on top of our treatment and equally to know that our prognosis stays favourable.
As you say, it's so important to keep as much normality as possible in our lives. Also like you with your caravan, I am in the lucky position of having free train travel and as soon as my confidence in venturing far returns, we intend to use it.
At the moment I'm experiencing the expected eg. how bad will I get and how long do I have left etc.
Since you are feeling ok I would concentrate on looking after yourself, enjoying every day you can and just get on with life rather than worrying about the what ifs and life span etc.
Stephen's local consultant has had patients on his case load who have had cirrhosis and lived with it for 20 years. We've often asked just how much damage has Stephen got? How much longer can his liver go on like this? Will he get worse? etc. etc. But we generally get the answer that docs don't have a crystal ball. It sounds like you got hit suddenly just like Stephen with an upper GI bleed bringing the condition to light.
I guess we do have to trust that docs will be on the case as soon as the need arises but I will add that you do have to stick up for yourself too and push for tests, results and answers as you want them because sometimes these arn't forthcoming and docs forget sometimes that the patient is a person with worries, stresses and concerns.
At least getting a transplant assessment will put you on the radar so you will hopefully get the best care possible from here on in.
Just my experience..not sure if it helps in any way?
but,
I first had the MELD system done in the US at diagnosis time. I was a 12. But they said they would not put me 'on the list' until I hit 13 or higher. At 13 they would begin making preparations to add me to the list, but 14 or 15 was most likely, if it was going to happen at all. Then I had a bone marrow biopsy and some other blood issues, so they said I was probably not a good candidate for transplant, as there other blood issues. They got this Meld number, I was told by three different tests, one of which was the bili.
Given the time structure we were given, it all seemed wrapped up. Then, miraculously, things changed here. I moved to the UK nearly 2 years ago, and just started seeing a GP in order to keep my meds regular, and to keep me comfortable.
Although I did stay healthy for close to a year, once I dropped, they brought me in for assessment in Feb. (Wed thru Fri) did all the tests and then said they felt that I was a good candidate and it was time to go on the list. Such a shock and blessing. And I was lucky enough to get on the new treatment for Hep C this year, which had not been developed when I first got ill..that was 2012.
I'm still confused about the way they test here? Is it for the same three things as the USA? and the UKeld..is that equivalent to the US Meld? (Assuming it is?)
I think my bloods had been pretty good, until about 2 months ago, but they relate to my massive ascites. I was told even with decent blood work, the fact that my ascites was so bad they would want me on the list wither way. But that was over 6 months ago, and I'm not sure how the new blood tests done every 2 weeks now figures into all of it.
Hi Kimberly, so am I correct in thinking you are now on the transplant list? If you are and you are now waiting for transplant in the UK it is the UKELD score which comes into play - it is a calculation based on your INR, serum creatine, serum bilirubin and serum sodium all of which are tested in your 2 weekly blood tests.
After your clinic appointment the transplant docs/co-ordinators calculate list placings based on who is in most urgent need and this is based on the UKELD score of you and everyone else on the list plus the seriousness of your other symptoms like your ascites.
When a suitable donor liver is offered to any given TP centre they look at their lists of suitable blood and size matches of those waiting and then see who is in most urgent need of those waiting and its then that the phone calls start happening and we all trust that things go to plan.
thanks it does! so, it is the same as the US then. Thanks for explaining it!! I know right now my sodium is not good, nor my proteins. And yes, I am on the list, so grateful to be!
I am also a patient at Addenbrookes (Transplant center, specializing in the liver) which is also a trauma center. So, they get offered the organs first, if they are being treated there (The donor) My transplant coordinator explained to process of what happens when a donor comes available..Its still quite a process, sounds like, and done quickly. I was very interested in all they go over and discuss and discover prior to the recipient even being called to come in. They really advocate to do the very best for us patients. The whole process is quite impressive, to say the least! I only wish my blood type was not what it was..its not an easy match..but, it's not the worst one, so thats good!
Best wishes, hope your call comes before too long, my hubby was listed for 10 months but then taken off the list because his bloods improved slightly and took him below the threshold, still I know what the waiting is like. We got to the transplant centre in Edinburgh - now every 12 weeks, was every 4 when he was listed.
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