Does it get any better ?

[RAGNOR]

Hubby has NAFLD . Has had multiply HE episodes. In the night when he tries to get up for the toilet , he is disorientated, confused - can't use his legs well and is unable to stand at times. He has fallen out of bed this morning . I did manage to get him to use a bottle , which didn't go particulary well. Does anybody have any suggestions or tips that may help me deal with this? I'm at my wits end with this and just cried my eyes out the morning. X

[AyrshireK]

What is happening about Edinburgh? He needs to be seen over there a.s.a.p.

There are people being assessed for t/p at other centres so I can't see why his referral to Edinburgh is taking so long.

It needs chasing up - my hubby was going to be referred in early 2013 but by June we hadn't heard anything so I wrote a letter to hubbies consultant and discovered he'd gone off sick himself and referral hadn't been done. Within a week of my letter we had been given an emergency appointment with a locum locally and in a couple of weeks had our first appointment in Edinburgh.

These things can slip through the net so it is very much worth chasing - if done in writing it goes in hubbies file and any ignoring it is negligence.

He shouldn't be getting all these episodes of HE and being sent home without support.

I can't offer much help on the current situation but do chase it up, you have to fight for hubby to get the correct care.

Katie

[RAGNOR in reply to AyrshireK]

Thanks Katie ,

After his 2nd stay in hospital last week . I called the hospital and requested to speak to a Doctor re referral to Edinburgh and hubby's deteriation and to request referral is done urgently. No call was received . The hospital told hubby that they would get back in touch with Edinburgh and expedite things from there end hubby was discharged with no change to meds. He has a liver nurse apt today at 2.30. My intention is to write a letter for him to take in with him , which will contain details of his failing health along with an urgent request for Edjnburgh and my concerns re his health. X

[AyrshireK in reply to RAGNOR]

That is most definitely the plan re. the letter, it is harder to ignore something in black and white. Hubby definitely needs to be at Edinburgh and assessed before much longer.

All the best to you both, Katie

[Hidden]

Hi Ragnor, I'm so sorry that you are having such a hard time - would it be helpful to phone the helpline at all? It is open from 10-3pm 08006527330. If you are worried about a deterioration in his health then I would suggest his GP or NHS111 or contacting his specialist team again. Take care,

Trust10

[RAGNOR in reply to Hidden]

Unfortunately he is not fit enough to attend hospital 2day. I did however call the liver nurse . After speaking to her I raised my concerns and asked her about LoLa meds which I have heard may help HE . She confirmed it was unlicensed but would speak to the DR. I said I had drafted a letter for hubby's file - raising my concerns about his deteriating health and asked he is marked urgent for referal to Edinburgh as time goes by my concern is that he will not be fit for assessment. I said I would hand the letter in 2day. She said she would call me back . Call back rec'd - husband will be seen 2morow by the nurse and there will be a prescription for LoLa to give it a try and sh assured ne the referal has been done and will be chased up urgently.

[RAGNOR in reply to Hidden]

Thank you for your help. X

[Hidden in reply to RAGNOR]

Hi Ragnor, I'm so pleased that you seem to be getting the help you need. Please remember we are here for you if you want to get in touch, I hope tomorrow's appointment with the liver nurse goes ok.

Warmest wishes,

Trust10

[TN-Nurse]

Hi! I am so sorry you are having a hard time mentally with your husbands state of health. I know the goal is for him to be able to get up on his own and preform daily activities such as toileting. I am sending positive thoughts your way that his medical will be sorted very quickly. BUT something for you to ponder is an option for the nighttime. Here is a link of an example of what might work for your husband. The reviews seemed decent. Best wishes!

Reusable Portable Male Comfort Fit Advantage Urinal System with Spill Proof Collection Bag amazon.com/dp/B003LUDNIM/re...

[TBSW]

Hi I'm sorry that your husband and you are suffering at the moment. I too had NAFLD, followed by cirrhosis and HE. I truly hope he is on the transplant list, as this is the only treatment for HE. It is a degenerative symptom of cirrhosis, and it's important that you arm yourself with as much information as possible, as it can get to the stage where he may need to be hospitalised. I got to this stage about 18 months ago, I was confused, and I was extremely weak from muscle wastage, I fell, very often. I was hospitalised for a week and received intensive treatment, thankfully I wasn't in hospital again until May last year, but by then it was critically important for me to have a transplant, otherwise within a short time, I wouldn't have been strong enough to survive the operation. If you don't have an appointment soon, I would personally contact his consultant and explain his current issues, as things can go downhill very quickly, good luck x

[RAGNOR in reply to TBSW]

Thanks for the information. My husband has been hospitalised 7 times in the last year the last 2 within 3 weeks of being discharged. I have handed in a letter with my concerns and asked that it be put in his file. Just now he is waiting on the t/p unit getting in touch for the assessment which I am hoping is sooner rather than later because as time marches on he is becoming bad with HE episodes and each time I feel it takes a bit of him with it ...very upsetting but I am in his corner pushing and fighting. X

[TBSW in reply to RAGNOR]

I'm glad he's getting support, I hope he gets his assessment really soon. Then goes on to get a transplant pretty quickly, as I got worse I was moved further and further up the list. Eventually I was on the super urgent list list, but due to other medical conditions, I was still on the list for almost a year to the day. But on a positive note, my brain has recovered completely. Good luck x

[RAGNOR in reply to TBSW]

Thanks - great to know . His brain is the one thing I'm most worried about as I just seem to loose him bit by bit when these HE episodes happen and lately he is not getting time to fully recover so it seems that there is always a bit of him missing and sometimes he looks spaced out😕. Oh I pray things move quickly for him 🙏 ...thanks so much ....stay safe. X