Advice needed please, hubby in hospital

Thank you for you kind words

I've been trying to put a general reply to all but for some reason I'm unable to add a comment on the post but it will let me reply to you

I was able to get into the hospital today to see my husband but again wasn't able to find anything out out. No one was prepared to give me any information and have been told to wait until the doctor comes Monday morning. I have arranged transport to take me and I will sit there all day until I get some answers!

Joe seems more yellow today but the dieretics are doing their job and his belly legs feet and hands are no where near as bad as they where. I have also found out today they cancelled his scan, I don't understand why when after reading so much this is one of the main investigations to show how bad things are? I may be googling to much and scaring myself but everything I'm reading about symptoms seem to lead to liver failure and the prognosis isn't good.. yellow, fluid everywhere , diareah, confusion, muscle loss etc. I just want to know what I'm up against and the chances of recovery. I feel so helpless as I'm confined to my chair and struggling myself. I feel so lost and alone and Joe thinks he's fine. Thanks for listening and I hope all the other people who have took the time to respond will see this post xx

Glad to hear that Joe believes he is fine. Positive sign. I'm sure they cancelled his scan because they believe he no longer.needs it. Don't try and guess the conclusion that his symptoms suggest. I've been doing that most of my life yet I'm still here.

Wait to Monday and in the meantime look after yourself and remain hopeful.

Aww Joanna I really do feel for you, this is a dreadful situation for you to be in, although sadly very common. It's like getting blood out of a stone.

From experience, I know you must be going round in circles, have a multitude of questions and no-one available or willing to answer them. Everything seems to grind to a halt over weekends, so you're realistically looking at Monday at the earliest.

I found out which consultant my mum was under and telephoned his secretary. I explained I had questions and would like to make an appointment to see him. She tried to fob me off by telling me to ask the doctor on the ward! errrrr is there one? I insisted I needed to see this consultant. The best she could offer me was to come to the ward at the end of ward rounds and he'd give me 5 mins. I was lucky and did speak to him, others however weren't .

The only other option is to contact PALS (patient advisory liaison services). Most hospitals seem to have access to them. You can find out online the nearest one. Google PALS as there is a lot of information there. As,to how good they are, or how they can help, I don't know, but maybe worth a try.

I really hope someone can help you. You've your own medical problems to deal with too.

Please know that you can post here and rant and rave as much as you like and unload. We might not be able to offer practical help, but we do listen and never judge anyone.

good luck and update us

Thank you and I will look into your advice...I just feel so helpless and alone. The more I Google the more I'm convibeing myself this is the end..I know I need to stop but I just can't help it x

Google is good up to a point, I think it's normal to try to find out as much as possible, particularly when you're kept in the dark.

Do you have any family or friends who could help you? There are many reasons why his scan was cancelled, maybe just down to the fact it's the weekend. Is he being detoxed with Librium or diazepam ? If he is then maybe that's why he thinks he's ok.

keep,posting anytime

I am pleased that you got to see him and that he appears to be getting better.

I have two messages. One, if he keeps off the drink, it is amazing how much better people get and quite quickly. He will be off the alcohol for awhile whilst he recovers. But when he starts to feel better, then he might develop a thirst.

Secondly, tell the consultant (doctor) that you want a scan done and don't take no for an answer. Bring someone with you if you can, that is happy to stand up to them if they start saying no. Things like, 'what is the complaint procedure' and 'can I take your full name', along with 'no, I don't want to go through PALS, I'm making a formal complaint' sometimes oil the wheels.

Don't be afraid to make a nuisance of yourself.

Hi, I've been to see Joe again and he is yellower but the diuretics are doing their job and he has lost 1.5st in 3 days, hoping thats good? Unfortunately no docs to talk to as weekend but I did request to see his notes but was refused. I will be armed with questions etc tomorrow. Are there any other tests I can push for? As of yet he's had blood test and chest xray and hopefully his ultrasound scan tomorrow.x

Hi joanna

sadly nothing gets done and no Drs to talk to over a weekend. You would get all the information, prognosis and all tests if RHGB was with you lol!

The weight loss will be down to the diuretics working. Not surprised about access to notes denied, assuming Joe has capacity. Ask to see or ask about his treatment plan. You can ask, but may not get information regarding multi disciplinary meeting or if they've even had one. If they haven't ask when they propose to have one. Will medication be in place for discharge. If it's campral he should start taking them immediately after discharge, not weeks later. RHGB will tell you all about tests. DONT LET THEM FOB YOU OFF.

Hope ultrasound goes as planned tomorrow..

Thinking of you, good luck

I wouldn't be too concerned about him getting yellower. I was in the ICU for over a week and don't remember too much of that part of my stay, but I wasn't yellow (pale maybe) when I went in, but my wife said I kept going yellower. It passes, the eyes stay coloured for longer than the skin. Then you go to what they call pallor and then back to normal.

I would be surprised if the diuretics alone are reducing the ascites by that much, are you sure they didn't do an ascites drain (tube to the stomach) on him? 1.5st is about 10 litres of fluid, which is what I had drained off me, and YES that is a good thing, because ascites is just excess fluid and can lead to bacterial peritonitis.

TBH, at this stage there is not a lot they will do, other than two things. First, by being in hospital, it keeps the patient off alcohol. The Pt is often dehydrated, malnourished and lacking in vital vitamins that sometimes need to be given by IV or IM. This helps them to recover. The food is slop, but at least the Pt is eating.

Secondly are the tests and things like the ascites drain. His ultrasound is an important one, not just to see the state of the liver, but the other organs as well. The other test I would want done, is a gastrscopy (tube with camera down the throat) to check for portal hypertension/oesophageal varices. People who become jaundiced and have ascites have a high chance of OV.

You could call PALS (PAtient Liason Services) at the hospital before you go and ask them that you want to read the patient records and they are being refused. I am assuming your partner has you down as NOK and said yes to you being told anything.

When he does eventually get discharged, don't expect to be told anything. You will be given one months of whatever meds he is on and told to book an appointment with his GP. He will probably then get an appointment letter from the hospital to see a gastro in a couple of months. Who should run more tests and may be tell you a bit more.

I have replied, it has been moderated, if it hasn't been okayed by late tonight, I will send a condensed version by PM later tonight.

Thank you 😊

Hope you've not been swearing again haha

I can't figure out the moderation rules at all...I never mention websites....I do type with a lot of dots....so maybe the computers think they are websites..but it is not like all my posts get moderated..I hate it and its weird.

I understand where you're coming from, a little knowledge can be dangerous. When there is no-one around and you see or hear something, particularly with medical terminology, google provides a quick and instant answer.

some people read through patient information leaflets word for word, especially side effects, which could put them off taking the medication . Like everything in life, moderation is the key word, and to be honest google is my best friend!