Update from previous post re Cause for concern

[MissS_Zebra9]

Following on from my previous post, my partner was admitted to hospital last Wednesday as the Jaundice was still present and he was very lethargic and sleepy. Since being admitted things have taken a turn for the worse, he became extremely confused and aggressive within a day or so and hospital callled asking me to go up there and see if i could calm him down but they had to give him something in the end and is now on lactulose which i believe could be for HE (yet to be confirmed). He is also on antibiotics for sepsis and his blood pressure dropped so low they had to admit him into Intensive Care Unit to have canula in neck for stronger medication to stabilise blood pressure.

He is now back on the liver ward as of yesterday and he is on multiple meds and energy drinks but I really haven't been told much and need to know what the full diagnosis is i.e. Cirrhosis - decomp or comp, is he being treated for HE etc.

Do you know whether the Ward nurses will be able to tell me exactly what's wrong or will I need to speak to a doctor. Everyone just seems so busy and when i ask they tell me they need to look at his notes and will come back to me (and don't) or tell me to ring later when i do call?

This is his 3rd time in hospital in 4 years, previous 2 times was for Alcoholic hepatitis. Its all very stressful not knowing what the future holds 😪

[McEwan1962]

hi, sorry to hear you are not getting much in the way of communication about how your partner is doing. The Dr’s will do a Ward round every day. If you can be there that is a good time to ask. They may be giving him information, but when I was very ill I wasn’t taking any of it in! The nurses are usually very good. He should have a named nurse each shift and they should be able to give you information. I understand how busy they are as I have seen it first hand, however you may have to be persistent, you may have to wait, but you do need to get the information. 🤞

[MissS_Zebra9 in reply to McEwan1962]

Thank you, i have tried to ring this morning to see when the ward round is but voicemail messages only. I rang 5 times yesterday just to be told to ring back later. I'm trying to get a time so that I can let work know as i work full time plus will have to pick up kids from school so its a bit of a juggling game at the moment. Will keep persevering 👍

[GO37]

Hello, I’m sorry this is such an awful thing for you to go through. this seems very familiar to my experience.. as the previous person said the doctor does tend to go around at a certain time of day but you can email the doctors secretary too? I had the impression that they don’t really know how the patient will respond to the intervention but if this is alcohol related then the liver will be hopefully recovering from lack of those toxins. We were in this situation 4 years ago and my husband is slowly declining but still secretly drinking which is awful..and I don’t know how he’s still going on but it seems the human body has an amazing ability to bounce back. It’s definitely a roller coaster …and not in a good way… the medication does help with HE though and my husband is a much nicer person to be around now he’s on the rifaximim. He also takes a lot of lactulose. I’ve completely had to emotionally detach and just do my best for him when he’s bedridden with it. Seems it’s kept him out of hospital anyway. Best wishes for you both

[MissS_Zebra9 in reply to GO37]

I completely agree with you, the only way i can cope is to emotionally detach myself. Deep down I know this is not the wake up call needed and will go back to drinking and in secret like your husband, it definitely is a rollercoaster, much love and thanks for your reply x

[Breakfastbabe]

I am so sorry to hear about your situation. My husband has decompensated alcohol related cirrhosis and has just come through Sepsis due to a UTI . He too was in ICU while they got his blood pressure back up and temperature down. He was then put in an isolation room when he was well enough to go to a ward.

A friend advised me to visit the carers' lounge at the hospital who would help me get information if necessary. They also helped with parking and secured a discount in the hospital restaurant. Perhaps your hospital has something similar? Or if not PALS can help you deal with doctors. I found ICU were very good at keeping me informed but it was harder on the ward, especially at the weekend. Doctors's rounds tend to be outside visiting hours but ask if, as his carer, you can be there at that time. If this is not feasible track down the named liver nurse on the ward.

I really sympathise as not knowing is so hard. I am not naturally forthright but I think you just have to keep pushing even though you know they are busy. I hope you get some answers soon. Take care of yourself.

[MissS_Zebra9 in reply to Breakfastbabe]

Thankyou Breakfastbabe. I'm trying to get up there today to see someone and get a full diagnosis so that I know what I'm dealing with when he comes home. How is your husband now? x

[Breakfastbabe in reply to MissS_Zebra9]

At the moment my husband is doing well thank you. We know it is a roller coaster so we are enjoying the good days as much as possible. I hope all goes well for you too and let us know how you get on. We are here to support you through this x

[2022minks]

When you next visit ask the ward sister for the name of your partners consultant, they will have a secretary you can contact and they will be able to liase a message to the consultant for you and hopefully they will be able to find time to see you. My mums consultant was very happy to answer any questions I had and as you would be his partner the more they can help in helping your partners at home support you should get advice. Read all the British Liver downloadable booklets this will tell you most of what you need to know. HE and the fact he has a sepsis infection will of increased his aggressive behaviour and keeping ontop of his livers health will help to keep this in some control. If you don't get any feedback go straight to PALS at his hospital they will get answers for you. I hope he is starting to recover sending you both much love xx

[MissS_Zebra9]

Thank you all for your support and advice. I managed to speak to his doctor yesterday who explained everything to me and was happy to answer any questions. He has Cirrhosis but it is compensated, they will be doing a colonoscopy to check for varices and and fibroscan to see how stiff the liver is. In terms of HE, he hasn't been diagnosed but he is on lactulose and nurse said it was because of toxins in the brain. He is on lots of medication and will be seen again in 6 months but is allowed home today.