British Liver Trust
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Cirrhosis and NOT on the transplant list?

Has anyone else been diagnosed with cirrhosis and not been referred to a liver unit, or put on the transplant list?

After being discharged from hospital last year (alc hepatitis and cirrhosis) I saw the gastrointestinal doctor about 4 months later for the first time and he said 'we're not looking at a transplant'. He gave no explanation as to why. Was I to ill, was I too well...

It was one of those times when there was too much to take in as it was my first appointment with someone who seemed to know what they were talking about, so unfortunately I failed to push him to clarify it for me.

Of course now I fully intend to ask him about it next time I see him.

Oh, and the discharge letter said 'early referral to the liver clinic' about which I've heard nothing. In fact the hospital receptionist seemed quite bemused about this when I called to ask to be put through to the liver clinic, and just put me through to general medicine instead...

But I'm just curious if anyone else is in the same boat.

Do you have cirrhosis but are not on the transplant list? And if so do you know why?

Thank you

G

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Hi Garyvh,

I’m too healthy to go on the transplant list and not sick enough. I’m at the liver clinic in Cairns hospital but it’s only tiny.

No list for me unless I’m dying, then I will be too sick to go on the list.

Cheers,

Brett

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Thanks Brett,

I'd have thought we'd be put on the transplant list anyway, but then suspended if our health improved.

At least we'd be 'in the system' then

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I ain't even in the system they wanna make there minds up can u imagine you got it then your miricle ain't got it five times I'm in the clueless group ! Just to make u laugh but it's trur

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So sorry

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Hi Gary, for a while after my diagnosis I was considered not sick enough to go on the list.

At the time I considered this a crazy situation to be in. Waiting to become sick enough to get on the list yet struggling to change my diet, stop drinking, and stay fit enough to survive the eventual surgery which was my only long term hope.

Now that I’ve lived through the process I can understand the reasons.

I had a couple of false alarms where I was called in for surgery only to have it postponed since someone else became considered more critical.

I was lucky enough to have my operation in time . I had become so ill that I was top of the list.

It is a sad fact that the doctors must have a priority system and, to my mind, they get it right often than not.

All we can do to improve the situation is to try to make more organs become available by promoting the donor system.

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Hi

I am afraid "Gastros" do not make the decision on transplant. You need to be referred to a Transplant Unit for assessment. Nobody can say you are not ready until the transplant unit has assessed you.

It is your right to demand referral to a Transplant unit

We had 4 years of a stupid Gastro in the end we demanded a referraL to transplant unit

Do you know the cause of your cirrhosis

Good Luck

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Hi thanks Freddie.

Yes, I'm wondering what the 'early referral to liver clinic' was on my discharge notes.

Perhaps it did mean the liver unit at another hospital as, as far as I know, there is no liver clinic as such at my local hospital - it just seems to come under the remit of the general medicine dept.

Maybe my reports were sent to a liver unit somewhere and they said no to transplant..

Thank you, I definitely need to be asking the gastrointestinal doc these questions when I see him.

G

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No one has the right to referral.

If this was the case, then the system would just collapse. There has to be (and is) a chain of command when it comes to this sort of decision making. Many people don't even make it onto the list as they don't meet to strict criteria.

Even when making it onto the list there is an ethical code that decides who should get that organ that has just become available. It's not a case as to who has been on the list the longest, as some people maybe in a more dire need of that transplant than others. (In the case of near complete liver failure, or cancer). The livers age, size and condition also needs to be considered.

With the new organ "opt-out" system soon to be introduce, many feel this will help with the amount of available organs. However, care is going to be needed, as the medical history of the donor organs need to be known before they are harvested, and don't forget the donors family have the final say. There was a case back in 2013 where organs were taken from a deceased rough sleeper. This persons turned out to have been an alcoholic. Two transplant recipients who went on to receive kidney transplants, later died. The alcoholic donor had parasitic worms and both the recipients went on to become infected with meningitis. This story can be found at: walesonline.co.uk/news/wale...

Organ transplant is, and always should be regarded as a gift, and not a given right.

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Sorry think you have misunderstood

My comment relates to being referred to a hepatologist not to the transplant list.

If a patient is only seeing a gastro they do have the right to be reffered to a hepatologist. They generally but not always are attached to transplant units

Hope that is clearer.

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I'm sorry, but I have to disagree with you. A patient can certainly ask to be referred to a consultant hepatologist and discuss further treatment by all means. And I'd have thought that if the consultant gastroenterologist was any good, they would have made the referral for further investigation anyway. We are patients of the NHS not customers, It would be so wrong to go onto make a demand and say you have rights, when in fact you don't.

Where would this end if we started to say we had rights? I want this, I demand that. I totally agree that when it comes to our own medical health, we all need to be totally selfish as it is our own personal health issues we're interested in and not the person sitting beside us. But once your in a hospital and receiving treatment, your human rights are being addressed and adhere to. You don't have any rights as to what sort of treatment you should have. However, you do have the right to go private, but in this case most of the services of the NHS are still used, only now you are a customer and not so much a patient.

I'm sorry freddie, maybe it's just me, but I don't like the idea of using "rights" when it comes to medical treatment.

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Sorry you are wrong.

We had personal issues with this.

We had a bad gastro who let my hubby deteriorate for over 4 years.

Asked gp. For hep refferal she refused. Contacted PCT who told us this was our RIGHT and gave us the wording for the letter.

Immediaty reffered to Kings.

kings consultant was disgusted at the lack of tests that had been carried out by gastro.

So please do not tell me I am wrong.

Personal experience holds out my comments.

He needed transplant within the year.

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I'm sorry you've had so many bad issues and I sincerely hope that your husbands condition has greatly improved. This would have been a failing of that particular healthcare trust. This sadly does happen, and it's terrible when it does. There are courses of action that can and should be taken. I'm sorry but I don't know what the PCT is.

My speaking of a persons rights is of a personal perspective, and I have to accept what you are saying and can only sympathise with your treatment (or rather the lack of it), I really don't know where this will lead and it frightens me.

I really didn't mean to sound unkind. I'm sorry if I've upset you in anyway.

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Spot on, Richard, and I think people should also remember that somebody had to die for that gift to become available.

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Garyvh,

Assuming that you are in the UK, there are guidelines for those with a diagnosis of cirrhosis.

In the guidelines;

1.1 Diagnosis

1.1.10 - Refer people diagnosed with cirrhosis to a specialist in hepatology.

1.2 Monitoring

Risk of complications

1.2.1

Refer people who have, or are at high risk of, complications of cirrhosis to a specialist hepatology centre.

1.2.2

Calculate the Model for End‑Stage Liver Disease (MELD) score every 6 months for people with compensated cirrhosis.

Hope this helps.

Jim

nice.org.uk/guidance/ng50/c...

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I was diagnosed with cirrhosis but not considered for a transplant. It was manageable.

I then developed liver cancer and was put on the list straightaway. The cancer was very aggressive. Didn't know whether cirrhosis and cancer were linked.

I had my transplant 12 days after being put on the list.

My condition was serious, life expectancy wasnt good but i was just well enough to have a transplant.

This is my experience.

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Whether you go on the transplant list or not depends as mentioned above on a score calculated. People can live for many years with compensated cirrhosis and not require a transplant (although I am referring specifically to AIH here- an autoimmune disease). The rules regarding referral to a list have changed this year and will be based solely on the scores and take into consideration input from the doctors less (this is my understanding of it from what I have been told).

In addition you will only be added if it is felt that you will not be on the list for years. In the past people were placed on the list for years, but the thinking now is that this is not helpful to the patient and therefore they will try to list you only when absolutely necessary. The list does not operate like a queue either, whereby you are number 10, then number 9 etc. It is based on seriousness of condition and also the ability to match. This is as much as I know, hope it helps :)

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As I understand it ( please correct me if wrong Jim or someone ) they used to do lifestyle transplants whereby you could qualify for one if your lifestyle was not as you desired ie miserable for you. Poor choice of words but i hope you understand my drift. Then the rules changed, and no matter how tough life was for you ie H.E or ascites ( fluid build up ) for example, transplants were only offered to folk literally on deaths door. This has left people, with cirhosis for example in the position of treading a very thin line between needing to be sick enough to need a transplant to survive but strong enough to survive the very grueling operation. Jim has give the requirements to qualify above, whether things will change now that the transplant rules are relaxing so hopefully making more livers available I don,t know.

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Not heard of this lifestyle issue.

Hubby was transplanted 6 years ago.

Scans never picked up hcc. On explant over 10 were found. Had they known they would not have transplanted and he would have been a gonna long ago

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We were told that at t/p assessment and then when hubby was delisted 10 months later. The majority of his symptoms are more cognitive issues - sleep disturbance, memory, concentration and chronic fatigue bordering on flat out exhaution. He (fingers crossed) hasn't ever had ascites, his HE is at the milder level, his portal hypertension was all but dealt with when his spleen died and all his varices eradicatad, he is not yellow and blood numbers have stabilised. He is far from 100% fit and can't work, drive, concentrate for long, needs lots of help for normal every day things. We were upset when he was delisted because we felt his chance of getting his life back had gone. We were told they used to do lifestyle transplant, however, with the shortage of livers and the fact that transplant is a very risky procedure with no guarantees of success plus some patients found they actually felt far worse as regards fatigue post transplant that it might not even improve his life. Transplant is a life saving op only and shouldn't be looked at as a guaranteed golden ticket for a happy ever after - indeed we've had many members on here with a less than rosy outcome.

Katie

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I was diagnosed with hep c,cirrhosis and HCC 31/2 years ago the hep c was treated ( hep c caused the cirrhosis)and had the HCC treated with abilation which was all very straight forward and painless there was no mention of transplant as they sought to help me by getting rid of the cause ( hep c ) and burning my tumour and this seemed to work for 15 months but unfortunately the cancer returned to original site and I’d developed another tumour in a different part of my liver and it was then that I was told that a transplant is my best hope of long term survival which thankfully I got 12 weeks ago.

As Jim pointed out there is a system in place where you get diagnosed and then your monitored as what happen with me.

What I would say though Garyvh is you should be under the care of a hepatology dept for your care

Huw

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Hi.me personally no.but i am a full time carer for my dad.he has a decompensated liver from cirrhosis and wont be having a transplant.both the GP and hosp have said he wont be offered a transplant.i had to ask bluntly why not?

Their answer in his case is, he cannot abstain from alcohol and wouldnt survive the op.his bloodwork is shockingly low and doesnt clot....ongoing aneamia which desperately needs sorting.

I guess everyones different,but make sure you get the answer and its clearly understood.theyre very good at being vague!

Good luck and best wishes

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My husband isn't on the transplant list, as far as I know, it's bacause he had kidney problems as well when he was admitted. From what I have read, it's too risky if you have had kidney problems.xxx

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Hi Gary, it is all very confusing I agree. My understanding and I accept that the criteria has changed recently, was during the tests to establish whether you would go on the list, we were told there were only 3 possible outcomes from that point, firstly you are too unwell to be listed, secondly you are too well at that point so would be monitored going forward, thirdly you would be listed after approval from the MDT team at their next meeting. Not being unwell I said “so I will be seen as too well at the moment” the co-ordination laughed and said No Ray with you it’s simply on or off. I had Cirrhosis and HCC. The biggest issue will always be more organs are needed than are available. As has been said you should be under a hepatologist but unless you get very ill the waiting time will be long. I waited 18 months before I was offered an organ.

Ray

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I tend to agree and think the only way forward is to support the campaigns to improve the number of organ donors.

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What is your UKLED score?

I think you need a UKLED score of 51 to be referred for a transplant assessment. My husband's was a score of 60 which meant that he had a 50% chance of surviving the next 12 months without a transplant. Last year he had suffered with pneumonia which triggered ecoli to develop & sepsis, sitting down his kidneys... nearly lost him twice in 10 days (which was the 2nd time in 2 years after his first varices bleed which came out of the blue in 2015) After a spell in hospital on Christmas day with hydration due to spirolactal his team made the decision to refer him for transplant assessment, which happened at the end of April & successfully under went his transplant on 12th May.

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I fear there will be a lot of people who will 'opt out' with the new organ donation scheme. I know there are many who feel they don't want their own or their loved ones organs donated to someone who has self inflicted organ damage ie liver / kidneys of an alcoholic or lungs of a smoker as there's no guarantee they will not misuse their precious gift.

The NHS medical specialists take a very different view, as far as they are concerned they are treating very sick patients and will do everything in their power to save them.

As we know they work long hours under extreme pressure and some Counties are severely under funded but staff are extremely dedicated and will do everything in their power and within their budget to offer the correct and best outcome that they possibly can. Where would we be without them? ❤ Yes mistakes are made and specialists views around the Country may vary but at the end of the day it is our own responsibility to take care of ourselves by exercising regularly, eating healthily and avoid pouring and inhaling toxins into our bodies.

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I agree with your thoughts that many may choose to opt out. Even if they opt in their family can over rule them when it comes to decision time. This would upset me in that position.

By actually having to do something to opt out it may mean that more opt in by default.

We have to find a way of improving organ donation but apart from supporting the cause I don’t know what to do.

I was pleased to find that when I renewed my road tax online I was given the option to register as an organ donor. More of these initiatives please.

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Just come across your message.

I think you are being a bit harsh with your comments re people not signing donor list re people who drink and smoke and are ill.

Do you realise just how many people out there have liver, lung or kidney problems totally unrelated to their way of life. Can be hereditary problems or results of some other health issue.

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I didnt say it was MY view. I AM very much in favour of organ donation and I would happily donate mine to anyone who may need them. I'm just saying that I have heard a lot of people's opinions are that they would not want to offer their own to someone whose liver is damaged beyond repair due to alcohol abuse.

My husband was an alcoholic and died 3 months before he could get on the transplant list. I'm just expressing others point of view too.

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Someone mentioned the new allocation system. Recently, The British Liver Trust website published the following to help forum members understand how it works.

britishlivertrust.org.uk/ne...

Hope it helps.

Jim

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Having read so many detailed responses to your question, I have only a simple comment. My other half was diagnosed with cirrhosis in November 2017 and was told by his consultant that any improvements would take place in the first 12 months after diagnosis, and the future would be addressed after the 12 months has passed. The question of a transplant has not even been mentioned at this point.

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Hi kyia, thanks for your reply.

Interesting about the 12 months thing. I'm also approaching the 12th month poin as I was diagnosed shortly after your other half.

Hope they are doing well?

G

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Thank you, Gary - he's doing really well to say that 9 and half months ago, he was rushed to hospital from vomiting blood and not being able to breathe due to ascites. His liver is now compensated and his body gradually recovering strength and stamina. I think the goal is to NOT need a transplant in my mind and hope that you just carry on getting better - at least, as much as possible.

You described that first appointment with the consultant perfectly - finally someone was going to tell you something important when you were feeling totally in the dark - we ended up writing a list of questions for the second appointment because the situation was really overwhelming. I joined this forum days after he was diagnosed, and never said a word to anyone, just trying to soak up some information. I didn't know where to begin to ask any questions!

Hope you're improving as well!

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Thanks everyone for your replies, really can't thank you all enough!

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Hi Garyvh,

I can't really speak to your issues as we live in the U.S., but I can let you know what my husband's liver doctor told us - he is also the head of the liver transplant department where my husband was/is treated.

This is just our experience

Hubby to hospital in late 2015 in liver and kidney failure with HE. Kidneys came back, hubby recognized me as wife not sister and his labs improved. Hubby walked out of hospital with new meds, diagnosis of cirrohsis, determination to stop drinking and a stay in a rehab, which ended up being very short by his choice.

Ok, at one of our 6 month dr appts, I asked our liver doctor about liver transplant, in part because our sons' had offered partial if needed. The Doctor said hubby might need transplant if liver cancer was/is discovered, but as his liver is working and his labs have improved slightly each time we see him, transplant is not in our immediate future. The doctor also said that one's own liver not working well is often still better than a transplanted liver because one needs pretty significant drugs to keep a transplanted organ healthy.

I can certainly understand not knowing or even thinking of what questions one might have in the early days, and I still forget things so I try to write stuff in a small notebook - one for the hubby and now had to start one for me. Use it and take it to all doctor appointments, with dates and what is said, changes to meds, if there are recommended new appts, it is a help.

Best wishes to you,

Mary

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Lets see if I can give a simple answer to your question. Very few people on being given a diagnosis of cirrhosis will be put on the transplant list at that time. This is mainly because many people with that diagnosis can go for many years without needing a transplant. Indeed, for some a transplant will never be needed. Hopefully you'll be in that bracket.

It is also not unusual on first diagnosis to be referred to your hospital's gastroenterology team. This is quite common in the UK as most hospital's liver specialists will be part of that team. Even if they are not liver specialists, they usually they have enough knowledge to be able to effectively manage you throughout most of your journey with cirrhosis. All hospitals have links to the major tertiary transplant centres for further advice should they need it. In general the majority of your management will be monitoring of your condition and treating symptoms as or if they develop. My management only formally transferred to the liver specialist at my hospital when I started showing signs of decompensation. Up until that point it was managed perfectly adequately by the gastro consultants i'd had. Its really just about having the right people in place at the right time.

OK, yes some people may have had a different experience and yes of course you could insist on being referred to a specialist in liver medicine. But, in a lot of cases, and I know some on here may disagree, that probably isn't necessary. If things are a bit complicated then of course may be someone with that more specialist expertise should manage you earlier in the process. Assuming of course your hospital actually has that specialist in residence (some probably don't). But if your diagnosis is clear and your management is straight forward, then personally I wouldn't worry too much about it.

Hope that's helpful.

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More than helpful ☺ Thank you so much

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Thinking back, the Dr did introduce himself at our first meeting as 'working within the gastroenterology department, as a specialist in liver diseases'. So perhaps he is indeed a hepatologist but didn't want to confuse me with technical terms at that stage.

Also he is on the researchgate website, which lists his specialities as liver diseases, HCC, cirrhosis, biliary tract disorders etc.

Of course the goal is NOT to be at the transplant stage any time soon, so I can see everyone's logic.

Also I would feel kind of disloyal if I went in demanding to see somebody else as he has been so very good with me, and he really got things moving once I'd finally got to see him.

Thanks again everyone ☺

G

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I never even entered me head as they keep say I got it I ain't but I been sober only 3yrs and I was not told nothing I'm sorry I ain't got answer but I no I ain't alone and nor are you x

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I’ve been diagnosed with cirrhosis two months ago and not on waiting list for liver recipient

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I’m still not sick enough to go on the waiting list. My liver doctor actually said “why do you need a liver transplant? You are healthy now and there are many many dangers with a liver transplant “

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