Husband was admitted yesterday and is now safely tucked up in Hepatology ward. After a bad week, in bed for a massive proportion of it and with 2 days really sleepy, I rang and managed to speak to an on-call hepatology registrar for advice. She told us to go up for an assessment. They've found his bilirubin has really shot up since last in clinic. He also has lost nearly 10kg, and officially has HE. No suprises there!
Ive been banging the drum, I knew he wasnt right. Tried GP, local A& E, phoning and emailing consultant and secretary over a period of 3 or so months. No one offered to just re-run some simple bloods...but oh well, thats what it is. Im just glad I was pro-active yesterday and hes now being seen to.
They say it might be a blip but hes been going down hill for 3 months or so now - i know hes been more jaundice since november, and his whole body is so tired - nothings functioning well, its like a 40yr old trapped in a 90yr old body.
Dr said last night that we must just take 1 day at a time, but it could be that transplant is back on the cards by the end of the weekend. I think we're physchologically ready for it now, especially him. He was never keen before, but his quality of life is extremely poor now. Especially if the take his driving licence away, which they will now. Its going to be a real game changer for him.
Take care everyone,
Ewife
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Ewife
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Sounds exactly the same way my hubby dropped at the back end of last year, high bilirubin, worse exhaustion than ever, HE obviously and was as slow as a 100+ year old. Has your hubby got or developed diabetes? That arriving on hubbies plate combined with HE just tipped him over the edge.
We had discussions about the Lo-la (L'ornithine L'aspartate) seems to work miracles for some folks - not so much for hubby though low and high sugars causing some of his issues.
I know....ive been watching your updates with beady eye 🫣He reached the pre diabetic stage about 2 yrs ago, but theyve not said anymore. Hopefully thats not on the agenda too.
This week has been so bad im actually relieved he's in and being looked after. Planning on a few hours respite after a draining week. And to get all my house back to order before i go and visit.
My son has actually offered his liver - breaks my heart a little bit and i dont feel brave enough yet to wave both my Rocks goodbye to major surgery. Hes only 20 but he suddenly announced it to me and had been thinking about it for a year bless him. ( Ive havent managed to say this aloud without crying yet 😵💫) But it is something he wants us to ask about so we have done, i guess it might be thrown into the mix. Dont even know yet if he would be suitable. I suppose it shows how desperate were starting to feel.
Live donor transplant was discussed at my hubbies 'decision meeting' but it's not an option as I can't do it as his sole-carer and no other family are able.
Hubby was told he was pre-diabetic in 2020 - then they labelled it type 2 which it isn't according diabetes team at Edinburgh.
very sorry to hear this news but agree that he is now in the best place to be cared for, examined properly and hopefully, if transplant is now the next option, that this can be sorted asap. Thinking of you and your family at this hard time.
so sorry to hear your husband is unwell, good for you for keeping on at the drs you know your husband better than anyone else and and you have helped him to receive the appropriate care he needs. Glad to hear they are looking toward TP if required .
Update:Thanks for everyones kind replies and well wishes. Its been a busy few days !
On Sunday the staff nurse had a chat with me and told be that husbands bilirubin had doubled again since being there so scans were being ordered urgently. She said they were looking for a blockage or at the actual liver (im guessing failure although she was kind enough not to say that). She also warned me that if things continued to go that way it was a possibility he would have to stay in until hed had a transplant.
He had an ultrasound yesterday - it has shown an unclear area around the portal vein so they are doing CT today, as this is sometimes an indication of a clot. However, his bilirubin has returned back to his normal level, so i think there must have been a block somewhere which has now moved. Either way, still lots of unanswered questions. The HE has been dropped for a while since the panic over his bilirubin. Also, he's lost another 3kg since being in hospital. He is so much brighter in his mood now, and of course, the odema is much better - hes spent 3 days in bed! Im sure some of his symptoms have been pure exhaution and im going to ask if this can also send levels spiking.
So, hopefully more answers today. I feel like ive had a few days respite (despite the worry, and travel). Ive caught up on a few jobs at home, and focused on the kids a bit more. Im going to put my feet up for a bit this morning before i travel over for hospital visiting. I feel like we still have a few battles ahead. Keeping him well fed and rested once home, and we're all just praying that hes listed for transplant now. Weve had one scare too many!
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