So we had an appointment this morning to see husbands consultant.He was aware that he had been declined for a transplant, due to other health issues.
So had a chat, and we are now managing the complications that go with decompensated cirrhosis, and to keep him as comfortable as possible. His consultant has prescribed water tablets, struggling with swelling in his legs, feet and tum.
We were told he maybe has 2 years, maybe longer, maybe shorter, as liver disease is unpredictable. I knew this was going to be the case but hearing those words, left me kind of shocked, so how do we go forward from this, advice to take each day as it comes, which is what we’re doing anyhow.
Where and how do I access support, because it’s damn hard running a house, everything that goes with it, working full time, I need to pay our bills somehow and I just can’t afford not to be at work, and looking after husband, it’s frustrating, it’s difficult.
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Lils2019
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You may benefit from giving our liver nurse helpline a call. The number is: 0800 652 7330 and is open from 10am-3pm Monday to Friday (except bank holidays).
I hope you find helpful advice my thoughts are with you .we are at the stage where we are waiting to see if hubby can have a transplant at the moment he on ssp and I work part time money is tough aswell as coping with liver disease and all that comes with it .I often sit and cry wondering where all this will end . Stay strong 💕
I’m sorry to read your update. I’m not sure what to advise. Is it possible that he may qualify for some carer support to take some of the strain off you? It may be worth a trip to the GP to enquire. Hopefully the diuretics will start to take effect soon and reduce the swelling. It may then help his mobility. Try not to let him think himself into a decline....easier said than done I’m sure. Try to make him do some exercise, even if it’s just a bit of hoovering to help you. I hope you are looking after yourself in all of this...it must be really difficult, but you must try to build in some ‘me’ time for yourself and enlist any family support that’s on offer. Take care.
Hey, can your liver consultant put you under the care of a specialist liver nurse. When my Dad was diagnosed as decompensated we were given care by the local hospice. They were a lifeline and helped my Mum immensely.
Sorry to hear this Lils, as regards help and planning for the future the BLT has a page all about the subject of Planning for the future in regards to end of life care etc. It might help with exploring options for support etc. britishlivertrust.org.uk/in...
Hi Lilly, I’m so sorry to hear your news. I went trough this with my Mum but I can’t imagine how much harder it is with your partner. We got fantastic support in Suffolk but I know it can vary depending on where you live. First ask your consultant or GP to do a palliative care referral. This opens the doors to other support. You can also self refer to a local hospice. Our hospice coordinated other support. They brought in community nurses who accessed carers, when we needed them, occupational health for all the equipment we needed, dietitian and bladder and bowel support. They also helped with benefits. You may be able to get disability benefits for your husband and caters allowances for you. This might take the pressure off you having to work full time.
Talk to your manager about what’s happening and see if there is support at work. We had a fantastic carers support network. I also got special leave with pay for a couple of weeks before being signed off work with stress and need up being off work for 6 months caring for Mum then recovering.
Marie Curie are fantastic. MacMillan advice, although aimed at cancer sufferers can also be very helpful.
There is lots of help out there but start with asking your consultant or GP for a palliative care referral. Best wishes
Hi, sorry to hear about your husband. My husband was in a similiar position in 2019. He was given 1 to 2 years. Had decompensated liver, ascites and HE. In his confusion in hospital ,he fell and broke his hip. We didnt think he would leave hospital. But, i m happy to say, he is still with us. His liver is compensated at the moment and his symptoms are under control. He has his good days and bad days. He has diabetes and kidney issues but we manage. Keep your heart up, and just take each day as it comes and rejoice in the good days. Take care of yourself
Thank you everyone,Some very useful information in those posts, I appreciate it.
Not sure how our two sons and daughter are going to cope, I have been open and honest with them from the start. I think it’s important that they know what’s happening.
Eldest is very, very close to his dad and is very emotional at the moment, so I have to try and support them also.
They have all let there employers know what’s happening so they can access support if needed. Same with myself my colleagues and managers have been very supportive.
Hi Lils2019, I'm fairly sure he should qualify for PIP, and you should be able to claim carers allowance for him. It may be worth having a chat with Citizens Advice. They will point you in the right direction.
I don’t know your story obviously but I think one of the things that resonated most with me is ‘don’t think himself into a decline’. I have heard stories of peoplebecoming compensated after a long while. Be realistic but remain hopeful and eat well and exercise
Hi, I was in a similar situation with my partner. I’m may 2020 he was taken into hospital and spent 7 weeks in there. He had decompensated cirrhosis and other health issues that came with it. We were told that he most likely wouldn’t survive his hospital stay. He did make it through and improved very slightly and was discharged from hospital with no help or support. We were told that he may have weeks or even months to live. I was working, looking after him, trying to pay all the bills, keep a house and two children. It was a very difficult time. I did some research of my own and contacted universal credited and disability benefits. They were very helpful, they said that due to his health issues he was entitled to payments from both universal credit and PIP as long as a GP signed the documents they would send them. The GP signed the paperwork straight away and he started getting payments in a week. They even back dated it to when he was admitted into hospital. We didn’t need to do anything els as it’s in place for 3 years and will be reviewed at the end of that time period. The financial help has been a god send as I was able to cut down my hours at work a bit and it eased the load. Not sure if this will be of any help to you in a financial sense. As far as medical support and help it was pretty much non existent due to covid. I just had to google and try my best to look after him. Happy to say that 2 years has now passed and my partner is doing amazing.
I’m pleased your partner is doing well.It will be two years next month, since my husband was admitted via a&e for bleeding varices, he ended up in ICU and was very poorly, Doctors we’re extremely concerned and didn’t know if he was going to make it.
He was discharged after 31/2 weeks back to the care of his GP, no follow up by hospital until he was referred back by his GP due to deranged LFT’s.
He then had another stay in hospital in March 2021, and then was given a diagnosis over the phone. He saw his consultant last August who did the referral to QEB, he was in for a week in Nov last year for transplant assessment which was declined due to other underlying health issues, and he was to poorly.
Referred back to his consultant at our local hospital.
Roll on to his appointment last Friday, where we were told there is nothing more that can do other than keep him comfortable, and treat the complications.
Very very unlikely he will go back to compensated as the damage is very extensive, he has HE, varies, portal hypertension, and water retention, bloods aren’t great but no worse.
He does claim pip, and there is no point in me claiming carers as it will be taken from our UC.
Unfortunately I can’t afford to cut my hours at work, but my sons and daughter still live at home and our hours do overlap, so it’s not often he’s left on his own, but he does sleep an awful lot throughout the day.
So that’s where we are at. So it’s now a case of pick ourselves up, dust ourselves down and go again.
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