My brother almost died from sepsis due to a huge abscess left untreated by the hospital. On the scans they found him to have child Pugh class C decompensated liver cirrhosis. Total shock to us. He’s no longer decompensated but is seriously ill after being in hospital for two months, having three surgery’s to debride the abscess and almost dying.
He’s been discharged with NO palliative care or advice on transplants etc. it’s like a losing battle. He’s seen one gastro doctor since his discharge in August and he didn’t give much help to be honest, just said he’d refer him to a specialist in Leeds. I have bipolar disorder and schizoaffective disorder and I’m the only family member that is able to help, but I’m struggling. Any advice welcome. Med wisehe’s on laxatives and oxycodeine, has a catheter permanently in because the abscess rotted his urethra and he’ll need reconstructive survey in a few mo the when the internal wound has healed fully. He’s 52 with mental health issues and autism that was never addressed as a kid so it’s a nightmare trying to get him help. He’s a hoarder, was an alcoholic /is, but not touched any since his A&E admission on July 4th 2023. Please go easy on me, I’m doing the best I can.
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MrsAlien
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So very sorry to hear of the situation you find yourself in, it's obvious you both have a lot to contend with.
Are you happy making telephone calls? If so I strongly suggest you give the British Liver Trust helpline a phonecall through the week for a chat with the liver nurses.
Call 0800 652 7330 between 9am and 3pm Monday to Friday (excluding bank holidays) or email helpline@britishlivertrust.org.uk.
Hopefully your brothers doctor has made that referral through to the liver specialists (hopefully at St. James's, Leed - which is also a liver transplant unit). It's a case of waiting for that though wait times are quite long just now due to the post covid back log etc.
Your brother needs to continue with his abstinence and keep himself as healthy as possible, decent diet & be fully compliant with any medical regime etc. Until he is abstinent a good while and takes part in some sort of sobriety support transplant assessment will not yet be on the cards plus he potentially may not be considered a potential candidate for transplant (on mental health grounds) but that would be up to the t/p unit to decide not lay people on here.
Your brother's GP should be involved in this and if palliative care is the direction needed & they should be helping with this - does your brother allow you to be involved in his care? -attend appointments with him. This is good support you can offer him. There may also be advocacy services available who can support him with his health care needs if he's struggling - does he have any involvement with mental health team? They might be able to steer him towards appropriate support networks.
The British Liver Trust has a good page about planning for the future which might be of use to you. britishlivertrust.org.uk/in...
The various bits of the Diagnosis and Care section of the website may also help, it's got sections on Questions to Ask the Doctor and more. britishlivertrust.org.uk/in...
It would be worth giving the BLT nurses a ring on Monday to see if they can give you more guidance and advice.
Hi, I’ve called the liver trust twice and they’ve given fab advice. He’s been abstinate and is watching his diet as best he can. The hospital keep promising a dietician. But…. Stewart’s I combed with inspire / alcohol support. I’ve got an LPA for him so he’s more than happy for me to help him. Can I ask why mental health may hinder him for a t/p?! It’s me who’s struggling too, I can’t keep up
With it all and it’s like he can’t think for himself despite being super intelligent, so I’m on overload.
To keep yourself strong, could you ask your GP, or MH team, to refer you for carer's suppprt. This is usually dealt with through social services in a supportive way. Respite for time for self, assistance with paperwork, etc.
Like I said we can't say one way or another whether your brother would be accepted for transplant or not but a patients mental health does come into the assessment process - basically because transplant is a traumatic procedure, the waiting for transplant, coping with the medical regime post transplant and the survivor guilt/PTSD that some patient suffer after a transplant can all weigh very heavy on someone with pre-existing mental health difficulties, poor coping strategies.
Within the Scottish Liver Transplant Unit guidance for assessment for transplant (which will be common with other UK centre') it states:-
9. Psychological State
Psychological evaluation is always required in patients with established or suspected alcoholic liver disease or substance misuse, and may be required in patients with other forms of liver disease.
Alcoholic Liver Disease/ Methadone Use Psychology Doctors should be informed about these patients when they are admitted to SLTU. UK guidelines exist for listing patients with alcoholic liver disease and substance misuse.
These patients will be asked to sign a contract relating to abstinence from alcohol and willingness to undertake prescribed treatment for alcoholism following transplantation . Patients in whom alcohol is believed a co-factor in causing liver failure should also sign a contract.
Other patients considered appropriate for referral to psychology for reasons such as depression, previous drug misuse problems should generally be referred by the Consultant Physician on-call.
Quality of life is important in determining the need for transplantation, and sometimes may be the main indication where liver function otherwise seems reasonable. Psychology should be contacted in the first instance about quality of life in patients where this is the major factor in consideration for transplant.
10. Social Support
Each patient being assessed for liver transplant should be seen by a Social Worker. Assessment priority will be given to patients referred through the Multi Disciplinary Team Meeting, those with poor social support, known history of child or adult protection concerns, maladaptive coping strategies, mental health issues, addiction issues, carer or childcare issues.
If he goes through transplant assessment his mental health and coping strategies and support network will be thoroughly investigated to make sure transplant is a viable option, but, for now it's a case of getting him on that even keel and sober and keeping as well as possible both mentally and physically and of course you need to take care of yourself if you are to be his rock going through this process.
Thank you for taking the time to be so thorough in replying 🙏🏻
He’s not touched a Sri m since July 4th and has been more positive with his attitude. I understand what you’re saying and maybe when we see the specialist they’ll discuss this with us. I juts find it unbelievable that he’s been out of hospital since Aug 24th and only had one gastro Outpatient’s appointment with no ongoing support. That’s why he will struggle mental health wise because he feels he’s been abandoned 😞
That's brilliant that he is maintaining his sobriety and long may that continue, that's a big bonus and will go a long way to hopefully helping his existing liver recover a bit.
Actually a long wait post release from hospital isn't that strange, my hubby (fiance as he was then) spent 3 weeks in hospital April/May 2012 having presented with decompensated symptoms. As a t-total chappy they had to do a liver biopsy to see what had caused his liver disease and 8 plus weeks after leaving hospital he had no formal diagnosis only cirrhosis and no follow up appointment was even scheduled till I did some chasing and finally an appointment got booked in. I've found you have to be a bit of a squeeky hinge to get the appointments and tests due, not rude or aggressive but polite and when needed put things in writing.
* hubbies local consultant told us he was referring him to liver transplant unit in January of 2013, when he went for an endoscopy in March the letter still wasn't done and then we got to June 2013 and still nothing and it was then we discovered consultant was off ill himself and no one had done the referral. A locum eventually saw us and did the referral and by the end of June 2013 we were through in Edinburgh for hubby to be seen at T/P unit. It was only once we were through in Edinburgh that hubby got to see a dietician, psychologist for his adjustment depression as it go labelled and that they finally got to grips with managing his condition.
Hopefully you'll hear from Leeds soon and your brother will get over there but if you don't hear anything within a month or so i'd perhaps chase it up and just make sure a referral has definitely been done.
Hya, thank you. I’m glad your husband got help eventually, maybe once my brother is at Leeds we will see things happen. He’s only got 10-15 percent viable liver at the moment as the rest is totally past regeneration, he’s struggling to take it in so we need all the services you mentioned. X
In addition to the suggestions from members of the forum we also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers) including a carers group.
If you would find it helpful to speak to others with shared experience, you can register to join a group here: britishlivertrust.org.uk/vi...
I've found the Sue Ryder people to be invaluable for palliative care. I have advanced liver cancer and currently take Lenvatinib to manage the tumours. Sue Ryder have provided medical equipment, advice on diet, physio, help to cut through the bureaucracy and navigate the inevitable red tape and they can help palliative nursing care.
Palliative care is for someone who is terminally ill with little hope of recovery.Don't use that word or request that type of care unless that's the route your going down.
The hospitals done a great job in saving his life in an emergancy and that's what the NHS are best at doing.
Leeds will take over the liver referral but his other conditions will have to be 100% dealt with before he is considered for a transplant (Hopefully he will not need a transplant)!!!
First and main concern for liver treatment now is NO ALCOHOL and engage in a recovery program.
They nearly killed him on two occasions. I’m asking for help, if he’s not a candidate for a transplant then he’ll need palliative care and support. This is all new to me and I’m looking for support not judgement for my choice of words, he’s not had a drink at all since July 4th and has been amazing. I’m hoping he’ll be seen in Leeds soon and we will get some more guidance. 🙏🏻
You are quite correct to seek the help you need and indeed the various options - it might be that yes transplant isn't an option and you'll be needing the help that does go along with having liver disease without that particular treatment option. That page I referred to about planning for the future from BLT gives some good pointers. britishlivertrust.org.uk/in...
Local hospices can be a great source of support too, they aren't there just for end of life but to make quality of life better in what time folks have left. They can help with pain control, respite care, support for you as a carer and more.
I'm so sorry to hear about your brothers difficulties, hospitals deal with the initial problems with things one at a time, and yes it's a slow process, and obviously having the other complications it will slow down his recovery, but firstly he's doing the right thing by continuing his abstention from drinking, and you will be trying to keep an eye on him at the same time, which will be a constant worry for you. And then you'll be trying to chase up what's the next process, and you'll be probably getting passed from various departments or people haven't got the expertise to give you the answers, and the other thing is trying to understand the information in a layman's terms of technical information they may give you might go over your head, it can fry your head, and overload your own brain, certain words can frighten us, and some of us don't want to hear negative conversations, or others want to be told how it is, it's an absolute minefield on how you are left to deal with this, can your husband if you have one give you any support, as people need another person to talk with, as it eases the burden and two heads are better than one,it must be so difficult trying to do this on your own, I hope your brother gets his health back on track and you get some support soon, best wishes.
Hello, thank you so much for your kind reply. I’m on my own, our parents are 80 soon and can’t handle it. There’s nobody else unfortunately. Social services are supposed to be involved but as usual, 3 months later and still nothing. He’s feeling sick all the time and can’t sleep at night. I think he’s eating the wrong foods and toxins are maybe building up again. He was told in the hospital ‘ear what you want’ but that’s obviously utter rubbish.
I feel guilty if I’m not at his beck and call, but I’m exhausted. I’m sleeping 12 hours a night and starting to have panic attacks again.
Thanks for replying with such thought xx hope you’re ok.
Unfortunately or how shall I say this the cuts to the various services are now impacting the very people like you and your brother are so very much in need of, it must want to make you feel like you want to pull your hair out. They expect you to know everything, once your brother was discharged from hospital a dietician should have been organised perhaps, especially with his mental health and autism, and no sort of care package, as soon as the health authorities know they think there's a relative involved that's a get out jail free card for them, and that's why you've ended up being the main carer, all to often this case.
So down to you now, do you feel like you need emotional support? It's always difficult asking questions to people you don't even know, some people don't even like sharing their thoughts, my own situation with alcohol is a long story, and I had a chaotic life, but was caused through a couple of traumatic incidents, and people can be judgemental before understanding my situation, however I'm sober now for nearly 12 years.
I had counselling to deal with the long term ptsd, but finding a group of individuals helped my problems, but mainly it involved one to one counselling, there's different groups on this forum where people talk about different problems, maybe that's not for you, but it gives you chance to express your feelings,but I'm more than happy to chat away anyway, there's a chap on this forum, and I can't remember his name I think it's Richard, he is a chap full of knowledge, he has a wealth of information I hope he can join in this he could throw a few more bits of valuable information your way, I know I can rattle on, but I feel you deserve a reply , best wishes.
Hello, thank you for your reply, I'm actually so grateful to everyone for being so thorough and not just saying 'hello thats a shame!' I totally need emotional support, although i know i'm gonna to have a breakdown the minute I start to talk about it all, so i'm avoiding it to a point, which isn't healthy! I'm told daily that I not shut, so talk away, it would be a refreshing change. I'm at my wits end, i don't want to go into details with my brother about anything, until I know for sure, but he relies on me and asks me questions daily, I feel like i'm letting him down every single day beau I dont have the answers. Ive taken a few days out for myself, and I fell guilty as hell. Even though i'm not seeing him, i either researching online or calling hospitals etc, its breaking me and i feel guilty for even thinking that. Thanks again for your support, I hope yore doing ok... x
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