Refused a transplant : Newbie here. My... - British Liver Trust

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Refused a transplant

Diamond101
Diamond101

Newbie here. My ex husband has just been turned down for liver transplant after 3 weeks assessment. His ukeld score is 65. He s unlikely to survive much longer as has been on borrowed time since last year when we were told he was terminal. He has every symptom going ascites, HE, jaundice, low platelets low sodium anaemia etc.his gait is unsteady and he mobilises with a Zimmer now. He is 60 years old. His grown up children are struggling to cope with him as he's very dependent on theirs and my help. He is an alcoholic but has not drank for about a year now. I think the decision not to put him on the list was based on fears that he would not remain abstinent after a new liver as he has continued to drink non alcoholic beer and cider. I think this went against him and the fact that he did not engage with any counselling that was offered by his hepatology consultant and it does mention this in his notes. He also previously twice had varicies banded but did not stop drinking after that either.

I can understand the decision but am annoyed that the liver team have not told him the outcome and he mentioned to me that he was surprised he did not come home with a pager! I only know he's been refused as I rang the ward where he was an inpatient. How on earth do I tell him? Has anyone else been refused on these grounds?

22 Replies
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So sorry to hear this, but yes, if the team are not happy that he is truly abstinent and not happy that he would remain so after transplant they would make that decision. It also sounds that maybe his liver is too far gone for them to be sure that he would even survive the surgery. It is very gruelling and takes hours to complete and then recovery takes a long time. As I said if they don't feel his body would cope that would also be a decider. Also they need to know that you will be compliant with how they want you to proceed after surgery and maybe you are right that refusing counselling would make them wonder if he would be.

Again so sorry for your predicament I know what it is like to look after your partner with all this happening. Look after yourself as well.

Mel2637
Mel2637 in reply to freddie76

Whether they want to do it or not is their decision but they should tell him what the reason is for refusing. It should not be left to you. I will be praying for him.

Just wondering if the team intimated whether they would be willing to reassess him in a few months? That would certainly give you both time to work on compliance issues, and also make breaking the bad news to him a bit easier as he would still have a goal to aim for. The non-alcoholic drink thing does seem to be a problem for some centres, though I haven't read any empirical data to back up the increased risk of relapse theory.

Wishing you both well.

Two things come to mind. One, it is not down to you to have to inform your ex-husband of their decision. You MAY wish to do it yourself, but if it were me, I would phone the assessment centre and ask for an appointment for your ex to come in and have the decision told to him and explained. Tell them you are not their messenger and a blunt 'no' letter is not acceptable either. They made the decision, they tell your ex face to face.

Secondly, ask them what the appeal/re-evaluation process is. Can he come back in three/six months time and go through the process again. If it is all no and it comes to nothing, they still have a duty of care, to explain what he should he expect, what he should be doing to make life as comfortable as possible and any palliative care opportunities.

If you don't get anywhere, the main part of the hospital should have a PALS dept. and start there.

Hidden
Hidden

It is not clear from your post as to how you found out the outcome of the decision and I think you need to approach the transplant team as a matter or urgency. It is there responsibility to inform re outcomes.

RHGB
RHGB in reply to Hidden

'It is not clear from your post as to how you found out the outcome of the decision'

'I only know he's been refused as I rang the ward where he was an inpatient'

Hidden
Hidden

I think you do need to be in touch with the liver team at your hospital. The decision is made at a multi-disciplinary team meeting and would normally be communicated directly and formally to the patient, rather then a chance conversation on the phone from someone on the ward.

I feel for anyone refused a transplant and I'm extremely surprised that the decision hasn't been explained directly where help can be given and questions answered to temper the shock.

To be honest I would be complaining about any member of ward staff saying such a thing on the phone. For one thing it's way outside their remit to give this information to anybody let alone a voice on the phone who could be anybody.

You don't state if you are his next of kin, given he is your ex and he has adult children. Either way as others have said it is not your place to pass on information you should never have been given in the first place.

I hope he alters his thinking and perhaps gives himself a fighting chance of being listed in a few months. I also hope that support and care is provided to the family.

In the meantime make memories and try to keep him comfortable as possibly and happy as possible

Rita x

Hannah,

In support of everything already said in reply to your post.

I'm really sorry to hear that you are in such a dreadful position..

Following my assessment I was in a very similar situation. The consultant himself phoned me and told me that although I was a very good candidate for transplant, I had not demonstrated any commitment to being alcohol free either pre or post transplantation and therefore, at that time, would not be listed.

Like you, I was surprised, as by already having been abstinent for nine months and stated that I intended to stop drinking permanently, Because of that, I believed that I would qualify for listing.

It was then made quite clear to me that if I didn't actively engage with alcohol services, I would not be listed.

The alcohol nurse specialist attached to the team then made an appointment for me to attend a local alcohol service. I confess I went reluctantly, only wishing to fulfil this obligation in order to get listed. However, I quickly realised that it was the right thing to be required to do. My drinking was well controlled by the simple fact that I was, like your husband, too ill to either be interested, or physically tolerate alcohol. How would I be with a fully functioning liver and a fit and healthy body ?

I began the one to one counselling and also joined a group discussion course for substance dependence. The group included people with the whole range of addictions, which was quite interesting to be honest.

Shortly after this all began, after confirmation from the alcohol service that I was taking an active and willing part in the counselling / group sessions, I was listed. Two weeks later I had my transplant. Despite it no longer being a condition, I continued to attend post transplant on a completely voluntary basis.

Mike is quite right, you need to contact the team directly as soon as possible. I'm assuming that you will have had an assigned Alcohol Specialist Nurse, if so, s/he should be your first port of call.

If you feel that you are being unreasonably, denied a transplant and wish to appeal. There are protocols in place where you can request that your transplant team refer you to another team for a second opinion. As somebody has said, PALS may be able to assist you in going through that process.

To reassure you, I was extremely ill prior to transplant and in 2015 spent a total of 80 days in hospital. There were many who believed I wasn't going to survive, fortunately for me, they kept me oblivious to that stark prospect. I am now completely well, and drink is simply something I used to do in a different life.

Lucy here:

I just wanted to add a bit to what Jim said. Have you been going to his appointments and did you attend the compulsory family meeting? I'm just wondering whether, maybe, your ex-husband was actually told, but because of the HE etc., he wasn't able to take it in. That would make sense. When Jim was having HE episodes, he often misunderstood or missed what was being said.

Either way, you are in an awful position. I feel for you both and wish you as well as possible in the circumstances.

Take care,

Jim and Lucy

I have to say, please don't complain about anyone. I cherish the people who let me know info, that is not given or not given to me, until much later by the official channels. People are only trying to help.

Could anyone please tell me how I find out about a transplant please as I have stage 4 liver cirrhosis oesophageal varices but have been sober over a year but I also have heart disease and diabetes so I have a alot to deal with medically making life difficult and complex and desperate for a better quality of life as I'm only 40 with young children can anyone help with advice on how I can see if I'm elegable for a transplant and who I need to speak too please ?

AyrshireK
AyrshireK in reply to Leanne77

Leanne, you should speak to your own hospital consultant and ask to be referred to one of the main liver transplant centres - they prefer to see people early rather than too late so you should ask for the referral.

Once referred you will often be seen in a clinic where the transplant consultants have a chat with you and discuss your medical history and try to establish the current status of your liver disease.

After that you might then be called in for a transplant assessment which varies from centre to centre - some do it as an inpatient over a few days, others do it in a few different stages as an out patient BUT all assessments are about assessing your liver health to see if a transplant is needed and how urgently, checking there are no contraindications as regards on going alcohol or drug use (people need to prove their commitment to life long abstinence) and also (and this will be very necessary for you) if you are physically well enough to undergo the lengthy operation and recovery period i.e. that you don't have any other health conditions that would prove too risky for transplant - they do focus a lot on your heart and lung health due to the length of time you would be under general anaesthetic.

An assessment involves a lot of medical tests, heart and lung stress tests and discussions including with transplant co-ordinators, surgeons, anasethetists, sometimes specialist nurses, psycologists, social workers and more. At the end of the assessment they all hold a big meeting to decide whether you will be listed (or not) and how urgently you need it.

Ask for the referral. Better too soon than too late.

All the best to you.

Katie x

RHGB
RHGB in reply to Leanne77

Are you UK based?

Leanne77
Leanne77 in reply to RHGB

Yes I am

RHGB
RHGB in reply to Leanne77

Okay, I only asked, because in the UK, they don't tend to quote stage numbers or MELD scores, but rather Child-Pugh categories.

Leanne77
Leanne77 in reply to RHGB

I don t know what these mEan can you please explain what meld score and child Pugh numbers mEan please? Sorry to seem stupid

L

AyrshireK
AyrshireK in reply to Leanne77

You don't really need to know them Leanne and in my experience other than UKELD score (which is the scoring criteria relevent to UK liver transplantation - United Kingdom Model for End Stage Liver Disease ) doctors seldom actually discuss stages, scores or scales ........ you know you have stage 4 liver disease which equates to cirrhosis as diagnosed.

The others mentioned by RHGB are the MELD score which is the Model for End Stage Liver Disease - a mathematical calculation which looks at various enzyme and other results to give a score which might predict mortality over various years, it is mainly used in the USA and Europe where in Britain the UKELD scale does the same thing (as score of 49 is the minimum required for transplant listing unless you have other things going on like liver cancers where you have the need for transplant without necessarily having the blood results to indicate liver failure).

The Child Pugh Score as also mentioned by RHGB refers to the following :- "In medicine, specifically gastroenterology, the Child–Pugh score (or the Child–Turcotte–Pugh score or Child Criteria) is used to assess the prognosis of chronic liver disease, mainly cirrhosis. Although it was originally used to predict mortality during surgery, it is now used to determine the prognosis, as well as the required strength of treatment and the necessity of liver transplantation." You can read more about it at :- en.wikipedia.org/wiki/Child...

As I said though you don't need to concern yourself with talk of scales, scores and what not. My hubby (as previously discussed) was diagnosed in April 2012 with cirrhosis and never has any of these scoring mechanisms been mentioned to us. We know he had borderline blood test results when it came to calculating his UKELD scale for transplant listing but that was the only time.

Hope that helps a bit, all these terms are a bit daunting at first but you get to grips with them over time (if you are at all interested).

All the best, Katie x

Thanks for all your responses. I did contact the hospital who made the decision that my ex husband was not eligible for a transplant, I have rang 3 times now and left messages but no one has returned my calls. He doesn't have an alcohol liaison nurse actually, should he have? Also nothing has been said about whether he can appeal, or if he can be re-assessed in a few months.

At the moment he is very very tired, hardly moving out of the bed and struggling to mobilise. The latest thing is his Spironalactone has been stopped and he is taking just 40mg Furosemide as a diuretic. This is really not adaquate for his ascites but his GP says the diuretics at such a high dose have now affected his kidneys and his sodium levels are dangerously low. She says they weren't controlling the ascites anyway (true) but now his swelling is getting worse. This will have to be drained more often and he is now awaiting referral back to the local hospital for specialist intervention again, I think when he was referred for the transplant his local hospital discharged him...it's all hard work trying to get seen, trying to get answers.

By the way, there was no compulsory family meeting and we did not attend any meetings due to the distance involved. This is my ex-husband, I have a new partner and help as much as I can but would not be able to go to a meeting a hundred miles away. Other family members did not get asked to go either.

RHGB
RHGB in reply to Diamond101

Can I ask which hospital is it? The bit about the diuretics is right unfortunately. It does seem like no one is taking ownership of this. Are you NOK, if not who is?

Diamond101
Diamond101 in reply to RHGB

I am nok. It was Addenbrookes at Cambridge.

RHGB
RHGB in reply to Diamond101

Okay, they have a PALS (patient advice liaison service) there.

cuh.org.uk/have-your-say/pa...

They are (PALS) very nice people, they are admin staff, not clinician. They are used to dealing with people's concerns and feelings.

They will answer the phone and they will get back to you.

I have dealt with them at both Warwick and also Coventry hospital, when the clinicians have not been forthcoming or helpful.

Call them, you may want to write it down first. Explain that your are NOK (they can check this) but he is your ex. Explain that he is thinking he is being called for a transplant in the future, when he has in fact been refused and that no one seems to want to tell him this and it is now becoming very urgent.

Ask about what the appeal situation is.

Just backtracking to the medication. What medication is he being given - just for the record, I am not a doctor, just someone who has been hospitalised through cirrhosis? Normally I would expect, carvedilol for his varices, spironolactone - which he was being given and now swapped fro furosemide for ascites, lactulose for his hepatic encephalopathy (brain confusion), thiamine for memory and a mix of vitamin compound strong B, B12 and folic acid for his general well-being.

The trouble is, that people who are that unwell and don't get out of bed much, do not bother to take medications. The other thing is he probably doesn't have an appetite and so doesn't each much. If this is the case, foods like soup and yoghurt are a good option. He should really be prescribed Fortisp, which only hospitals not GPs can prescribe, due to the high cost, my acute dietician had to prescribe them for me.

I hope there is some useful information in there and don't leave it so long next time, to post back.

Diamond101
Diamond101 in reply to RHGB

Hi thanks for the reply. He seems to be on all the above meds..his GP has prescribed Fortisip, he's on Rifamaxin also which I know is very expensive and he takes a prophylactic antibiotic twice a day.

Funnily enough he does eat quite a bit so that's something, but his muscles are now severely wasted and he has a very bloated abdomen and huge elephant like legs so mobility is an issue.

I may try the PALS route. I have so much other stuff going on in my life plus I work full time, it is hard to find the time to fight these battles.

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