Laura* has fought to obtain the best possible treatment for her husband, turning to the British Liver Trust's Nurse-led Helpline for advice and support while his condition deteriorated in intensive care. Now as he waits for a new liver, Laura has joined the trust's Online Support Group for Carers, gaining strength from sharing her experiences with others in a similar situation. Thank you for telling your story, Laura
My husband was self-employed, but in 2019 the work was reducing. He felt anxious and afraid of being in his fifties and not having a living, so began drinking quite a lot. His parents and the children asked him to cut down, so he went to his GP but they weren’t helpful and didn’t refer him to any alcohol services. Then when Covid and lockdown hit, his work completely stopped and the drinking volume went up. He was drinking around eight cans of cider a day, gaining weight but eating a lot less and becoming very grumpy.
He went to the doctor a few more times and tried AA, but as an atheist the references to God didn’t sit well with him. We weren’t aware of any other options, even though we did ask. He should have been helped a lot more at this point.
In April 2022 he got a parasitical stomach bug which gave him the most horrendous sickness and diarrhoea for four weeks. He literally couldn’t stand up and was so dehydrated that I took him to hospital. I expected him to be there for a couple of days, but within 24-48 hours he was in intensive care where he stayed for six weeks. His kidneys had completely stopped working and his liver was also damaged and unable to fight the bug.
He was on dialysis and intravenous antibiotics but going downhill. Communication with the hospital was absolutely appalling – I would visit him at least once a day but couldn’t find out anything because the doctors and nurses were just not talking to me. I made lots of complaints to PALS.
I Googled the British Liver Trust and they were amazing. The website has the best information available and the Nurse-led helpline helped me many times with some really difficult conversations when my husband’s care was not great and I was being ignored. The hospital didn’t have its own liver unit and the Trust’s nurses told me how to push them to contact their sister hospital which did and get some different treatment options. It worked and my husband was given a drug which kick-started his kidneys and got him off dialysis.
The British Liver Trust's nurses told me not to give up
And even though he was hallucinating due to hepatic encephalopathy (HE), my husband wasn’t prescribed Rifiximin. I raised this with a number of doctors and called the Trust’s nurses who told me not to give up. In week four of intensive care I spoke to another consultant who said: “Of course he should have it” and it was finally prescribed.
After 23 days in intensive care and 2 weeks on the gastro ward the hospital discharged my husband because they needed the bed, but it was too early. He’d had no physio in intensive care, had lost 40 kilos, still had HE and couldn’t walk.
How was I expected to keep a full-time job and care for two children when it wasn’t safe for him to be alone? What if he fell down the stairs? He couldn’t go from the bedroom to the bathroom or down to the kitchen and they said I’d just have to put a tray of food in front of him for eight or nine hours.
So I was on the phone to the Trust’s nurses again who told me what to say to get some things in place, but the hospital still sent him home with no care, no physio – nothing. Forty-eight hours later he was back in A&E and in agony. They were so understaffed that I had to leave the kids at home and go up to the hospital on the bus four times that day to give him food and water. He was moved onto the ward but discharged again after five days with no care package in place. There was no care from the GP or community nurse either. He was so weak, had to use a wheelchair and couldn’t move or get to the bathroom in time. He fwll once and the children and I had to lift him up off the floor and get him back to bed. They were just 12 then. He wasn’t in control of his bowels and they had to see that too.
When he came out of hospital he was referred to a unit called MDU which deals with kidney and liver outpatients who need more care. You go for regular blood tests and, depending on the results, the doctor there might look at your medication and increase or decrease as required. That service has been very good, but it’s an ongoing battle.
My husband was told if he ever drank alcohol again he would be dead and hasn't touch a drop since
When my husband was first diagnosed, he was told if he ever drank alcohol again he would be dead and hasn’t touched a drop since. They also said he might need a transplant, but it was only now that he got connected to the alcohol services – they were all there before, but we had no idea.
He got his first appointment with a gastro consultant over six months after coming out of hospital when he was still in a wheelchair and couldn’t walk. I’d done loads of research on the brilliant British Liver Trust website and went along too with lots of questions. The consultant was marvellous and answered them all. She believed that if my husband’s blood tests continued stabilising, he would be in the area for a liver transplant.
However, because the whole experience has been so traumatic, my husband was now on antidepressants. She said he would have to come off them, improve his mental health, be out of the wheelchair and physically able before he could be considered. We paid for private physio, and in April 2023 he went for a transplant assessment and was put on the list. Within six weeks he got the call, but had a complete panic attack – shaking, vomiting and saying: “I can’t do it”. It was clear to me that he had PTSD from being in intensive care without any mental health support.
So again, I pushed all those buttons, with help from the British Liver Trust. I believed both the GP and liver unit had a duty of care towards his mental health if that was stopping him from getting a transplant, but nobody could help so my family clubbed together to get him private mental health support. Once he’d dealt with the PTSD and anxiety, he was back on the transplant list on 29th August 2023.
He's been stable for around a year now, can walk a mile, do three-four hours activity a day, cook a meal, do the washing up, go to the shop, but he has to rest and put his feet up. His joints really hurt all the time, he needs a lot of sleep, and he’s not strong. He can’t open a jar of pickles or carry a hoover up a flight of stairs.
Battling for bloodtests
The GP should be giving him blood tests every month and passing them to the liver unit, but they just don’t – we’ve battled with them for ten months and have now given up. They also wouldn’t prescribe the Fortisip protein drink because it was too expensive. I asked the hospital dietician to send an assertive email, but the GP still wouldn’t do it, so in the end we had to ask the consultant.
I’ve had to build up relationships with consultants who can fill out prescriptions and then hunt them down, this can mean ringing the hospital three or four times a week. If that fails it means sitting in reception and waiting to bump into them. We’ve also had letters with appointments that arrive after the appointment has been.
I’m a very determined, annoying person who won’t give up and without me I don’t think my husband could have fought those battles because he was too ill. The fight is exhausting and I wonder if many, many other people are not having the right treatment because they can’t fight.
There are a lot of brilliant people working in the NHS, but it’s completely broken so you need to know what conversations to have and buttons to press so you can support your partner. Be resilient and don’t give up. Things do improve, but it can take months.
Hepatic encephalopathy has completely changed my husband’s personality
Encephalopathy has completely changed my husband’s personality, he has sleep issues, can’t remember things very well or process information like he did before, needs notes and repeated reminders. He used to be kind and empathetic, but is now very grumpy because he’s in pain a lot of the time. He often can’t communicate because he can’t find the right words or process communication coming to him, fill in forms or read a book and we’re talking about a very intelligent man who was very capable in full-time work for 30 years.
There’s also a very different relationship between us now as husband and wife. Because of the encephalopathy he doesn’t hug or kiss me or ask how my day’s gone. I’ve tried to make him learn to ask and also act as a bridge between him and the children by spoon-feeding him things to say to them. It’s like having three kids. I’ve been under huge stress trying to keep a job and keep him and the kids ok. Both children have been under a lot of pressure too. We’ve had mental health support which has been really important and friends give us lots of support too.
My husband receives disability benefits, but there was no help accessing those either. It was a horrendous process because the people assessing you may or may not understand about liver disease or encephalopathy. I had letters from the consultant and hospital discharge letters providing independent evidence of what he could and couldn’t do, but it still took eight or nine months before we got any payment. It’s difficult if you don’t understand a patient’s rights and the NHS and benefits system is an absolute minefield.
Don't take no for an answer
Getting information is key and I recommend visiting the British Liver Trust website, particularly on questions to ask a doctor and when discharged from hospital. When you’re stuck the Nurse-led helpline is absolutely invaluable too. If you’re looking for support don’t take no for an answer because it is out there it’s just a question of finding it. I would also recommend doing some research if you have family members who need to know what’s going on in a kind and sensitive way. I had to tell my kids that the doctors didn’t know if their dad would live or die and ask them if they wanted to say goodbye to him in intensive care. I really needed help with that conversation. The Trust's nurses really helped with this too.
Carers have a heck of a lot on their plates, we’re not going through the physical pain but a lot of other challenges and that’s why I also joined the British Liver Trust’s online support group for carers. There are people on there with partners who have had their transplant, or are on the list or where I was a year ago – in hospital and panicking. It’s a really great forum to share those stories because you just need a glimmer of hope that things will change or improve. When you see people who are further along and coping, it shows that you can do it too.
My husband could have died in intensive care, but he’s alive and able to function for half the day because of the treatment he’s had and the medicines that he’s on. He’s a Dad to our children and that’s incredibly positive.
*Name has been changed as Laura wishes to remain anonymous