Hello
Firstly sorry don't know where my head is at.
My partner has been mostly in hospital since September with decompensated liver disease. One admission after the other only out for a week or two at a time I guess the way i can decsribe my feeling is
'What the hell is going on, where do I start, where does it end how bad does it get how do I cope...
Hi Livewell69 and welcome. I'm sorry to hear your partner is so unwell and how tough things are for you. I have cirrhosis but haven't experienced illness to the degree your partner is going through so I'm not best placed to offer much insight in to it all. There are people here who will know more and others who are supporting their loved ones as you are. You''ll no doubt receive more replies soon.You can always call the trust for information and support. Don't forget to take care of yourself as well and I hope things improve for you both.
Coralsun
Thank you so much I think this forum is going yo be do useful for me. I ferl so alone at the minute
Hi
I have been down a similar road, and my wife as carer, I got a transplant after 7 years of struggle, and its not easy!
But on the road there have been better periods where the treatment given gets control of things and life improves.
Now my life is back to normal, my wife still worries so it is totally vital to ensure you look after yourself, do not underestimate the strain on yourself, take any help you can get.
All you can do is take each day as it comes, knowing it will get better.
You did not say where your Husband is in Hospital my first thing was to get referred to liver specialist Hospital, then I got the very best of treatment from consultants that know what they are doing.
Every journey is different but the people on here are very supporting there have been times that without their support life would have been much harder.
If you have any questions please private me and I will help if I can
David
Hi David
He is at the Freeman Hospital Newcastle which I believe is one of the best liver units. He was discharged again yesterday but we had a lovely meeting with a liver social worker and transplant co-ordinate who suggested it is likely that our consultant may well have that chat at our next appt . At the moment he is not well enough to be considered for assessment but if we can build him.up it is likely we will have to go down that route
Hi
That is good news, the journey can start.
The Freeman is one of the very best hospitals for the treatment of liver disease.
They have a support group on livernorth.org.uk/, I have met some of them.
My wife is from North Shields so we visit, that way and I spent a week in a Cramlington Hospital when I went down with HE and collapsed.
When I was ill I would get pangs for bananas, eating a bunch a day, that then turned to apples and never stopped drinking tea.
You have to eat a little often and let the treatment and drugs work and he will get stronger.
It good that you are getting more information, I know the others on here will always be there with honest advise.
Please keep in touch and let us know how things are going
David
Hi Livewell69
Do you want to call the helpline? We can have a chat, it is open Monday to Friday 10am to 14.45 on 0800 652 7330
You are not alone. Hopefully you will find our forum a supportive place to visit.
Best wishes
Trust1
You are so much braver than I was 15 months ago when my partner was diagnosed with the same. I felt completely stupid and helpless and I used the internet to try and find some answers. I found this forum almost straight away, but I never had the courage to ask for help - I just sat here and read and learned a lot. One of the best bits of advice that I've seen on this forum is to take a pen and paper with you when you see the doctor - write down any questions you have beforehand, and then you won't forget to ask, and you'll be able to make notes of what they tell you.
When you have any specific questions in the meantime, if you ask on there there's nearly always someone who's been through something similar and can give you some support and advice. As others have said, all journeys are different, but this forum has some really knowledgeable people who are very supportive.
I am beginning to realise although diagnosis can be the same each person is quite unique in the way they present and the symptoms. It seems like people can live with these conditions and maybe lead a relatively normal life. Ill keep reading I feel like this is an escape room almost...a good thing
Hi and a belated welcome to this phenomenal forum livewell
You say he was admitted to hospital for decompensted liver disease. But was he having episodes of Hepatic Encephalopathy? Did they say why specifically rather than just the general liver issues?
Miles
2018 rushed to hospital with oesophagus varices. Then fast forward a year to the day and again taking in this time concern was infection markers and high levels of potassium. Upshot was sepsis and pneumonia and decompensated liver which involved in episode of HE. He was in intensive care for 8 days and then a further 4 weeks in hospital because of the liver and kidneys. From there he has been admitted on several seven occasions all different things going on septic arthritis, infection of his jaw bone, ulcers of the mouth always accompanied with either low magnesium potassium zinc etc. That's about all I know
Thanks for response livewell. My, you both must be going through terribly traumatic times with so many issues to deal with. I can’t really add much because I only had cirrhosis to deal with along with the consequent HE episodes . I really felt my wife as carer had an awful time - as I think I’ve said before - I think it’s worse for the carer than the patient, at least we know what we’re suffering (or not at some rare times) so please do, as others have said, look after yourself!
All the best to you both, and do pease, if you feel it might help (.?) come back on here to give us updates.
Miles
Hi Livewell69,
I've been where you are now as a carer of someone with decompensated liver disease and like you was in a bit of a state of shock. I've seen some things no wife should ever see their husband go through and it's hard to get your head around. I too came across this forum and quickly realised that there is a great network of people here who can help and support you. Listen to what the doctors say, make sure that he follows their advice and sticks to it, ask lots of questions, always go with them to appointments so you can remember what has been said as it's unlikely he will at the moment.
My husband has now moved back into a compensated state of cirrhosis and his quality of life is improving so things do and can get better, it just takes time. More importantly, look after yourself, it's really important that you take a bit of time out for you, even if its a quick coffee with a mate or a walk around the block.
Take care
Jx
This is so new to me 😷😢
Hi to all in Health Unlocked
Exhausted all the time! 
Liver biopsy all booked
Sending you all a smile!
