Night time nausea

[Diamondbabe]

I am a little confused what is going on with my husband.He's got ARBD, acute kidney disease and ARLD.

He has started being very sick late at night and this morning I noticed traces of blood in his sick bowl.

He says he's not in any pain, but I am concerned as this is a new symptom.

He refused to contact our gp and continues to drink to excess.

The doctors seem to have given up with him.

He has no muscle mass so cannot walk unaided now.

He barely eats.

It's so distressing to watch helplessly while he deteriarates.

Just wondered if this could be the start of portal hypertension?

X

[Morkmindy]

Why do you keep popping up

[redpoint72]

Hello love.I'm sure your probably thinking bleeding varices?. Or maybe not!

Although if your vomiting or retching daily you can find small amounts of blood in whatever comes up.....his body is trying to expel the alcohol......ive been there.

It could well be portal hypertension,.....

Is your husband on any medication at all?.

Is he not on some ensure plus protein shakes or similar?.

Although if he is still drinking to excess, they won't do very much i expect.

Does he not see any consultant or gp etc?

I didn't have any pain at all regarding myself having ruptured varices.... nothing to say they were there.....until the obvious!!!.

It must be heartbreaking for you to witness,you have my utmost empathy....

Thank goodness,im single,so no one close to me had to witness what was playing out for myself, as it would not of been a pleasant sight.....I felt sorry for the nurses and paramedics,that did see it .

Take care love.

Chris

[Diamondbabe in reply to redpoint72]

Hi ChrisHe only takes omaprozole and thiamine.

I asked our gp for ensure but he said no.

He spoke with liver consultant in March and had blood tests. We haven't heard anything since that.

She said she would refer him back to gp if no evidence of cirrhosis.

[redpoint72 in reply to Diamondbabe]

So no information since march????I would be be putting a rocket under them if it were me!!!!

Why won't he speak with his gp?

It is because he already knows what they will tell him??

So you don't even know for sure that he has cirrhosis ,but obviously certain amount of damage has been done.

Its as though he could do with an ultrasound and an endoscopy......but if he isn't willing to engage, there very limited as to what can be done....

I'm sure you know all this,sorry if you do love,im stating the obvious.

My best.

Chris

[Diamondbabe in reply to redpoint72]

I think your right.I think I need to chase up his blood results and tell her his new symptoms.

She did write to us saying he refused to engage.

Very frustrating because I do love him, but so angry with him at the same time.

[wp69 in reply to Diamondbabe]

You can buy Ensure plus juce on line , my GP just prescribed me 30 bottles

[redpoint72 in reply to Diamondbabe]

It puts a slightly different slant on things, when he isn't willing to engage with his medics......There isn't really much they can do.....if he has capacity to decline help....ultimately its his decision, but a very difficult one for yourself.

Yes,of course you love your husband....thats what marriage is all about...

But you are in an impossible position, stuck between a rock and a hard place...

If he was eating something that would help somewhat.....as he has nothing to give him any energy. Does he not even want any "treats".....food wise,that would tempt him? Because there comes a point where anything is better than nothing

But I know from my own experience...over 4 years ago I was imaciated.......nothing to eat for days....weeks on end.....

The only thing that stopped me drinking was a massive variceal bleed.....

It took that to bring me to my senses......and its not been an easy ride since.

I would pester about bloods and express your concern about new symptoms....

The thiamine won't be doing its full job,if still taking alcohol.

Can you phone tomorrow?....see what the results were, and take things from there.

Take care.

Chris

[Alibaba80 in reply to redpoint72]

Hi redpoint, can I ask you did you have severe weightloss when you were very ill and were you able to manage calorie/ protein drinks? Thank you

[redpoint72 in reply to Alibaba80]

Hi Alibaba....In answer to your question...yes I was severely malnourished......when I was so poorly.......the nurses kept saying to me how extremely thin my arms were,when taking bloods,or put on iv drips. I had to do some hand exercises, to try and increase my muscle mass

Legs that thin I had trouble walking.

Yes I was given ensure plus protein shakes immediately, when in hospital....4 per day if I remember correctly.

I did tolerate them as long as they were cold.....but only certain flavours!!!

I've never regained all the weight I lost over 4 years on,and appetite can be poor.

My best.

Chris

[Alibaba80 in reply to redpoint72]

I see thanks for the response Chris.How did you manage to drink them if your liver was so poorly ( I know they contain a lot of stuff!).

I'm very underweight and continuing to loose and I really struggle with the drinks

[redpoint72 in reply to Alibaba80]

Ive never struggled with them......as i said along as there straight from the fridge!Well they were prescribed in hospital by my gastro consultant......there full of vitamins and minerals, plus a good amount of protein to help with muscle loss.

Some flavours were abit sickly......but I found several acceptable, they were essential for building me back up.

I still get some on prescription, for as and when there isn't much appetite

Have you tried them in the freezer as an ice lolly?

It does work.

Take care.

Chris

[Alibaba80 in reply to redpoint72]

Hi Chris I can drink them initially but I feel very ill afterwards to be honest.

How ill were you Chris ( if you don't mind me asking please) and how did you recover?

Thank you

Alex

[redpoint72 in reply to Alibaba80]

VERY ill!Things were just about as bad as they could be.

How did I recover....

NO ALCOHOL whatsoever.

I shall never be the same again im afraid.

Chris

[Alibaba80 in reply to redpoint72]

I understand completely Chris, that is exactly me now. I can barely eat, I have breathing and heart symptoms, I have terrible bowel issues, fatigue and headaches. In fact I have very little quality of life.This has been going on for a couple of years now Chris And I have continued to deteriorate. And I can not understand why. I have not touched alcohol for 2 years, I take no medication whatsoever, and I eat relatively healthy ( when I can) generally porridge and fruit, and some cheese and a little sponge cake in the afternoon for calories.

It's very distressing to be honest..

My doctors and dietitian all recommend calories and drinks etc but I can barely eat. It is very very hard.

How is your diet Chris?

Alex

[redpoint72 in reply to Alibaba80]

Well......How's my diet...sounds as though were both struggling with it at the moment alex🙄😌Today for example......1 egg sandwich.....1 yogurt.......

350 calories........not enough by a long way.....so there will have to be 2 ensures later.......appetite is just not there, the muggy weather doesn't help.

Well the porridge is good for you,I sometimes have that,with some fruit, same as yourself.

Must admit I'm completely fed up with it all at the moment, i can't really walk as ive got these compression bandages on at the moment, due to very stubborn fluid in my lower legs,that has to be brought higher up my body to be able to pass more easily.

Oh well im sure things will improve at some point!!!!!

Take care .

Chris

[Alibaba80 in reply to redpoint72]

Yes, you're struggling like me Chis lol!!I have no appetite but also bloating nausea and discomfort in my chest and abdomen so eating is very hard.

I have not felt hungry for a very long time! It seems liver disease takes away all the good/ nice feelings!

[wp69 in reply to Alibaba80]

They are a godsend , im on the Ensure Plus Juce (thats how its spelt) 10G of protein various flavours , don't need them as my appetite is back , but im going to keep on them 👍🏻

[Readlots]

Would your husband be willing to give you written authority to deal with his doctors so that you can find out what’s happening? Also, if they aren’t doing much as he won’t engage, would they do a referral for palliative care? That might access some support with equipment for your husband and carers to support you as he deteriorates. Failing that, will the GP arrange support for you? You need regular breaks do that you can keep going, and someone to talk to about all this. I found the local hospice incredible for support for my parents and will definitely be accessing them myself when the time comes. Definitely chase those results. With everything that’s going on in the NHS, things fo get lost in the system.

[Diamondbabe in reply to Readlots]

Morning,Thank you for your kind words.

I have proxy for him now so able to speak with medical staff.

I have social services on board too. They offered a care package ,but he doesn't want someone else involved . They cannot force this while he has capacity. ( i hate that word) in my opinion he doesn't have capacity to make the right decisions for his welfare.

They provided a stool to help him shower and built a step to help him get out of the house.

I wonder at What point our gp will consider palliative care and how that will look for us.

I want to care for him at home as long as I can.

X

[wp69 in reply to Diamondbabe]

At least your in control now , you can even try and wean him off the drink slowly if your in charge of his finances , wish you all the best with his care x

[Readlots in reply to Diamondbabe]

That’s good. Social services sound like they’re on the case. For my Mum a palliative care referral meant a chat with two people from the hospice about what Mum wanted. It’s a very person centred support. They talked to Mum about what was available and she said yes or know and talked about what she wanted. It was a really emotional conversation that I couldn’t have had on my own. They organised medication to be kept in the house. They looped in the community nurse who visited twice a week to start off with and involved the occupational health team who brought bath steps to help Mum get in and out of bed ( good bit of lateral thinking) to start off with. Then a shower stool, perching stool, and bed rails to help her pull herself up in bed. Later they bought a commode and hospital bed. That was a tough day. The community nurse also organised an odeama nurse to measure Mum for leg supports. They provided pressure cushions to stop Mum getting sores and advised on massage which I did daily. Later the community nurses arranged carers to do personal care 4 times per day and for a delivery of incontinence pads ( another tough day). They also coordinated Marie Curie nurses to sit with Mum overnight. I know this is the gold standard because we didn’t get this for Dad 5 years before. Mum died peacefully at home with me and my brother. I hope this gives you an idea of the sort of things you can ask for either from Social Services and your GP practice or from the palliative care team once they are on board. I couldn't have looked after Mum at home without all this support. I hope you get what you need and that your husband allows you to involve others because you’re the one doing all the hard work and carrying the emotional burden and you deserve some TLC x

[Georgio24 in reply to Diamondbabe]

I feel hes given in and having almost been there,you drink(with me it was bottles of brandy washed down with cider) you feel ok as you're semi conscious/alert really then sleep then start again to get rid of the guilt and ALWAYS feeling very scared that you're dying.Its a circle of fear and self loathing that he has to break and its f-----g hard.

Stay with him until you no longer can

[Diamondbabe in reply to Georgio24]

Bless you.You are so right.. I think he had given up too. The thought of never being able to drink again is too much for him. His moods are unpredictable 1 minute very clingy and loving. Then when I go out of the house for too long. He gets nasty. Accusing me of allsorts. Threatening to lock me out even selling our house.

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Diamondbabe,

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Oldbits]

Sending hugs to you. As everyone has said chase up the results, gp may have them already. Chat to gp about the new symptom and test results also the future care, they will put it on their records even if he wont except help. We use the NHS app myGP and it shows blood results etc on it. Does your surgery offer this or similar? I can access my husbands results etc as he had given me permission. It is so heart breaking to watch the man you love disappear. Maybe some more pillows so he is sitting up more at night might help? Look after you too