Advice needed ascetis

Hi

Hope everyone is doing ok.

Hubby ascetis is bad again and when it gets uncomfortable we are suppose to phone the ward and they get him in for a drain as soon as they get a bed. So we phoned 2 weeks ago and they said they would phone when they have a bed.

2 weeks go by and with various phone calls still no bed.

We saw the consultant yesterday who said he would try and get him admitted for a drain. After a lot of waiting around he tried his best however the hospital is full and is on 'black' alert so we came home.

Phoned the ward manager today who said she would try but couldn't guarantee anything and recommended that we go to a and e.

I understand that they can't just magic up bed and I know she will do her best to get him in as soon as possible.

I'm just looking at my options now as he is in quite a lot of discomfort and not very mobile. He has also developed a small wheeze but says he's not short of breathe and he has had a wheeze before.

A and E means a lot of waiting around on a cold uncomfortable bed being prodded and poked before they tell us what we already know and then he's shuffled around the hospital until a bed is ready on the gastro ward. Last time he was admitted he was on 4 wards before moving to gastro at 2am one morning. He is quite confused and hospital is very stressful for him as its so unfamiliar plus a doc tapped his fluid once when he wasn't fully with it and scared him. He tried to escape he was so scared.

Having a drain done needs quite specific needs both putting the drain in, removing the drain and the in between albumin and emptying. I have found that the experience is not there especially the in between bit. The last drain he had was put in on a different ward and the nurses didn't really know what they had to do I ended up having to prompt them on what they had to do. Therefore some wards just won't do it.

He needs the fluid out but I don't want him to be in hospital longer then he needs especially with Easter coming up. Weekends and bank holidays nothing happens unless it's an emergency. Even gastro won't do drains at the weekend which is ridiculous.

Was thinking about contacting gp surgery but I'm not sure what they can do.

Also considered contacting another hospital but I don't know how that would work.

It's so frustrating and I know it's not the hospital's fault but I just hate seeing him in pain. I will take him in if his wheeze gets worse or the pain gets worse.

Hope this makes sense.

What would you guys do?

Thank you in advance.

Xx

[h0b0]

Hi . Sorry to hear about Hubby & sorry I can't give any advice 'cos my partner is currently @ St James Leeds for his assessment. He has been in 2 separate hospitals over 6 wks & his belly is growing daily but nobody seems overly concerned. He has actually gained over 10 kilos since he went in .

Hobo.xx

[Hidden in reply to h0b0]

Thank you. I'm hoping mine will have his assessment soon as he has been in and out of hospital since September 2015 this is the longest he's been out just over 4 weeks. Finally got referred to Birmingham last month but still haven't heard anything. Waiting is so frustrating. I hope you partner's assessment goes well and he's listed soon. Xx

[AyrshireK]

Ascites is a medical emergency, if it is continuing and pressing on his other organs it is dangerous as it can restrict breathing plus squash the stomach thereby reducing appetite.  Also it is possible for the fluid were to become infected which is life threatening.  If you've waited 2 weeks without success for a bed in order to get this drained and treated then I would seriously be considering a trip to A&E.

[Phoenixv]

It's horrible go to your gp and they can ring up the hospital has a emergency to get the drain done my husband had a a drain yesterday and he has it done every 10 days he could not manage it otherwise hope this helps

[grumps]

You must take him straight to A E it must be done with urgency..the longer it's not done the more danger he is in.

It might be messy going from ward to ward etc and waiting about but it outways the consequences.

Please take him today 

[chandler54]

my husband goes through exactly the same thing.We had to get a gp letter last wed which bypasses the front a and e and takes him in on assessment unit.they finished drain at 11pm that night and sent him home,15 litres.Are you in Wales? In England they get booked in for drain ,in Wales not.

[dooley1]

This is an absolutely terrible situation for him to be in poor thing, speaking as one who knows how terribly uncomfortable/painful ascites is. He must be so breathless by now,with all this weight pressing on his lungs. It's so painful as all your organs get squashed. Is your GP any good he def needs a referral to be fast tracked in A&E. It is an emergency as if the fluid gets infected then it becomes very serious very fast! It's so frustrating for you I think you need to get pushy. Hope he/you get some relief soon. Where in the country are you?  I would def try another hospital. 

Good luck

[Catfishjumpin]

How many pounds of fluid is he holding? I have had it 3 times and this is what I do. The most fluid I have retained is 13 pounds though. I would stop eating all sodium, all protein and go onto less tah a liter of fluid a day. I would think my weezing was from there being no empty space but only tight compressure is all of my trunk. Its a hard place you are in and he is. I am really sorry you cannot get into a hospital. I hope things turn around quickly for him and there is a hospital he can get to.

[dckimberly]

Sorry, late seeing this. Sadly, it seems like you might just have to weather the A&E if it's that bad.  I wish wish wish you were near Addenbrookes Hospital. Then you could get in as needed. 

Sorry he has to go through this. As someone who had massive ascites, I know how painful and miserable it can be.

Getting drained on a reg basis really is the only way to have some sort of comfort while waiting for a transplant. 

I had to do the call in also. I would call as soon as I started to fill up. Then by the time I was in real pain I was being drained. Then I just had a standing appointment for every three weeks, then two, then ten days. 

Thinking only good thought for you 

Kimberly

[Hidden]

Thank you everyone. 

He is being so stubborn actually fighting me on this so a long night ahead. We are off to a and e. The ward make it seem to simple it really isn't. I live in Reading the nearest specialist unit is royal free I think. 

Time to go to a and e forcing him against his will isn't what I wanted to do but it's to far along now.  He thinks I'm a 'horrible person's who's forcing him to see the bad people' 

Looks like its triggered HE now. 

Xx

[AyrshireK in reply to Hidden]

He needs this drain, if the fluid becomes infected it can really be serious.  Make sure A&E know that he has HE symptoms so that they don't put down any 'awkward' or 'aggressive behaviour' as something other than his hepatic encephalopathy symptoms.

It is shocking you've been left this long and especially now it is going into a Bank Holiday weekend.  Ascites is a dangerous condition.

Wish you all the best, Katie xx