Trust your gut Update

[Ewife]

So.....husband was discharged Wednesday evening, on the condition that we keep the clinic appointment Monday. I think on Tuesday/wed we start to see the spark back in his eyes a bit, and his apetite was slightly improved. His bloods were still heading back to his usual range.However, on thursday eve his colour suddenly went a bit grey again. He was up from 3am friday am and didnt manage much more sleep than a doze all day. The spark has gone from him, and his appetite decreasing. Last night he was up from 1am. He has gone back to sleep now thankfully but trying to keep a teenage household quiet on a saturday is a nightmare. Hes skipped meds last night (i didnt realise) because he suddenly came over exhausted at 8pm and im not sure if hes had todays yet - dont want to wake him. Hes definately not eaten. He also does this "corpse" trick on me when he does finally go into a deep sleep - so i have to keep checking. He looks like a body - no skin colour, lips deepened colour and drawn back, chest rise and fall only slightly detectable. I swear, my stomach has hit my throat WAY too many times lately.

Its just a total nightmare - i dont know how long we can live like this. All he has done since he got home is moved from Bed to recliner, recliner to bed. I was going to say Eat, sleep, repeat but its not even that!I can see him slipping and once again, feel like its down to me when to make the call. Mondays appointment feels like forever and im scared they wont listen to me.

After having said he had HE when they admitted him, one of the others came round and said he hadnt (although thats husbands words - i wasnt there). I tried getting clarification before we left but didnt.

I guess i always knew id have to watch him get worse before transplant was back on the cards. I only hope it is now.

Take care All,

Ewife

[Millie09]

Hello Ewife ,I'm glad hubby was discharged, but sad to hear of his yet decline.

I can only imagine what's going through your mind at the moment, I went through this with my own father amd trust me I so know how it feels , standing over him , watching the chest rise and fall ..

You say you have an appointment on Monday , I would definitely ring for ambulance if you think it is needed before that day Ewife , as you said in one of your posts to Trust Your Gut , don't ever think you will be a burden on NHS, if hubby needs the help then tale him to A&E

all I can reiterate is to please look after yourself aswell, sometimes I think in times like these we live of the adrenaline, I know I did for weeks on end whilst caring for my dad .

I pray that hubby will improve again Ewife , sending strength and hugs 🫂 to you all .

Linda x

[Ewife in reply to Millie09]

Thank you so much Linda. We seem to be developing a pattern of Can't sleep periods and Can't wake periods.Yesterday was a day of sleep, including night. Today he's more wakeful so far, so im onto it - making sure he gets those meals and meds in reguarly.

Im going to pop out for a spell today and see some friends. I dont like not being with him though. I feel like i need to be with him to get a picture of how he is. Even having his Mum last week tired him.

School broke up for half term last friday and my son is staying away with friends which will really help - i can have a week off from feeling like i need to keep everything "normal".

Atb

Ewife

[Millie09 in reply to Ewife]

Your so welcome! Yes , I expect the sleeping pattern is extremely irregular and unpredictable , but just hang on in there ! Your doing amazingly well , I know how difficult it can be but tomorrow is Monday so all or Any questions don't forget to jot down and ask tomorrow, I wish hubby all the very best for tomorrow Ewife.

Please don't feel guilty taking tome away for a few hours ,this is what is needed for your own mental health or you too would suffer health wise .

Great news that your son is staying with friends.. that will help immensely.

Let us know how you get on tomorrow.

My very best

Linda x

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Ewife,

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[Millie09]

Hello Ewife Was just wondering how things were?

What did the hospital have to say.

Hope hubby is as good as can be

My very best

Linda x

[Ewife in reply to Millie09]

Hello! Thanks for reaching out.The clinic appointment went well, the team are sharing the same concerns as me which is reassuring.

There are some more blood test results they are waiting on, and the dr we saw was also having a meeting with haematology after seeing us, just to check theres nothing else which hepatology are overlooking. Seems fair and very thorough.

After this, they will discuss the case with the transplant team (hopefully next week depending on results being back) and if all are in agreement and no complication he will be going back on the list.

He said at some stage husband will definately

be needing one anyway so there is no point waiting for him to become less and less fit for the surgery. (Couldnt agree more!)

Just hoping and praying that there will be no further complications in his health and the wait will be shorted and more successful than last time he was listed!! 🙏

Funnily enough, husband feels a bit more energetic today, and has gone into work for a couple of hours. Im sure its partly because he has a bit of a goal to work to, and some hope.

Im having a nice day catching up and doing some planning with lots of cups of tea 🙂

Take care everyone

Ewife

[Millie09 in reply to Ewife]

Thank you for taking the time to reply back..I know how busy you are .

Wow that's great news Ewife , I'm pleased for you all that the appointment went well and a positive outcome by the sounds of it .

Hubby seems to have picked up a little doesn't he I bet he's so relieved as are you ! 😌.

I shall keep everything crossed anyway for your onwards journey

Glad your having a nice chilled relaxed day .

All the very best

Linda x