This is a new one !!!!: Greetings... - British Liver Trust

British Liver Trust

38,081 membersβ€’18,674 posts

This is a new one !!!!

β€’13 Replies

Greetings 😘

Well !! I have never heard of this and don't quite believe it 😧😧

Darling Rob has been 'non-compliant' as usual - refusing wound dressings and tablets etc - locked house up with him in it - Sunday pm - wouldn't let me or son in 😒😒 managed to get GP to go round but dogs were on guard - so police went in - eventually into local hospital - diagnosis - HE and ? Wound infection 😑😑😑😑

He was discharged from Kings 2 weeks ago - everything fine !!!!! Now his LFTs are 'deranged' how ??? In 2 weeks ???

Anyone else ever heard of this ???

Read more about...
13 Replies
β€’
AyrshireK profile image
AyrshireK

Sorry you are still going through all this - it is not blooming fair when transplant seems to promise so much more of a positive future.

What are the medics saying now? - I would imagine his deranged LFT's are down to the non-compliance with meds, if he's not taking those properly then things will definitely be going out of kilter with the liver especially with the high viral load from his hepatitis as well. Plus, the wound infection will have an effect if body is trying to fight that at the same time as being immune suppressed. What a hell of a time!!! :(

Are the transplant team getting the psychiatrist involved to try and help? It is a vicious circle though I guess, HE means he's ill and it isn't a choice or behaviour he can modify but not taking the meds can (I guess) lead to the bad liver numbers and the HE. If it's a choice thing - like he's giving up and is being resistant himself (without HE) then the psychiatry side of things might be able to help.

Sorry I can't offer more wisdom, but, do send my thoughts and best wishes.

Katie xxxx

β€’ in reply toAyrshireK

Thank you 😘😘😘 I say he isn't taking meds but his 'tacrolimus' levels were 7 which is perfect ??? I had a print out of his FBC/LFTs from when he left Kings 2 weeks ago and all were within normal parameters apart from a few - from my experience weren't majorly important ? without the others being raised ??? Will have to find it and review πŸ˜“ sounds horrid but I have had enough now πŸ˜“πŸ˜“πŸ˜“πŸ˜“ don't think I can go through all this again πŸ˜”πŸ˜”πŸ˜” he's already rang me twice this morning to say he is leaving 😫😫😫😫

Catfishjumpin profile image
Catfishjumpinβ€’ in reply toAyrshireK

Any chance he has a high ammonia reading and its affecting his thinking? Surely he is not acting out? My god how many need a transplant, no one should have one if they are not going to take the meds needed for the new liver, it will fail if you monkey around with the dosages of those meds.

rickyrocket1 profile image
rickyrocket1

i have a friend who got sepcis through a wound on hi leg and he went very odd because it went to his brain lasted a week and hes getting better now

β€’ in reply torickyrocket1

Ah thanks xx that sounds better (sort of) did he have any history of liver disease ??? Rob had 'biliary sepsis' few months ago but no signs of HE ???? I was always under the impression that HE was 'liver' related - and as we have been told - liver is fine - I don't get it πŸ˜”πŸ˜”πŸ˜”πŸ˜” Robs HE before transplant was quite severe !!!! I can't see how his LFTs can change so drastically in 2 weeks !!! His meds are 'tacrolimus/omeprazole when needed and painkillers for post op wound' - the painkillers are tramadol and oramorph but he doesn't take them regularly (as he should) so I can't see how they would affect it πŸ˜•πŸ˜• xxxx Hope you are ok 😘😘

rickyrocket1 profile image
rickyrocket1β€’ in reply to

im fine waiting to see conultant next week at royal surrey hes very good my friend was a drinker for many years but his liver was very good really as i said the sepsis came from a bite he then got very ill and hallucinations but better now he was on tramadol also anyway hope it all gets better ricky

Catfishjumpin profile image
Catfishjumpinβ€’ in reply torickyrocket1

I know someome with a transplant almost lost his leg, he got Staff infection from the reef swimming.

scottyboy40 profile image
scottyboy40

Hi hon, I'm sorry to hear your having a tough time with Rob today. The only thing I can think of

Is because he's stopped taking his

lactulose and rifaximan. That's what I've been on since my last big episode. But I was taking every single dose. They took me off the rifaximan a couple of months ago

But I still take lactulose twice a day. I know Encephalopathy is a liver disease but it affects the brain as you know right. So taking

Morphine and Tramadol does not sound like a good idea, as these slow everything down.Hope this helps you a bit. Take care. X

β€’ in reply toscottyboy40

Thanks Hun 😘😘😘 as he has a lovely new liver I just can't get my head around why he would need 'rifaxamin and lactulose' again ?? Perhaps I am thinking to Nursey about it πŸ˜†πŸ˜† he doesn't have a high intake of protein - not dehydrated - had endoscopy recently - no portal hypertension or varices - had 3 MRI all fine (apart from the bile duct thingy which is sorted) - they did say bilirubin was high but that could mean it's 20 !!! Cause Dr was Baby doc and didn't know I was nurse so didn't give values !!! I am going to stop worrying now as obviously it can happen - just gutted 😫😫 thought we had got rid of all that - nothing worse than being locked out of your own house with 11 yr old standing in the rain calling 'daddy daddy let us in' and him saying 'go away leave me alone' 😒😒😒😒😒😒 poor lad doesn't want to come home again now 😒

scottyboy40 profile image
scottyboy40β€’ in reply to

Awwe i hope he gets better soon and you and youre son get to have their Daddy back.Stay Strong please and he'll be back to himself soon i hope.

You are a trooper and dont forget he loves both of you very much.

He's very poorly remember.

Take Care.x

Tatjana profile image
Tatjana

I am so sorry what you are going through. Wish it to get better soon. Cyber hugs. x

This sounds awful I can offer you no advice but you have my sympathy i hope you get it sorted.

jules45 profile image
jules45

Hi, sorry to hear of your latest traumatic experience. I have read many of your posts and struggle to reply with words that may help. You really have had a terrible time. I remember my ex partner getting extremely aggressive when taking tramadol but he wasn't a liver patient its just that drug made him paranoid and damn right awful to live with. I am a liver patient and during my time with him when my liver failed twice he showed me no compassion - just aggression and I couldnt get through to him or have a civilised chat. Im not saying tramadol makes everyone have a short fuse.

There are many factors in your case that make your situation unique and distressing but my thoughts are with you and hope your situation improves. Perhaps my liver failure at the time made him aggressive to me due to my HE etc. I don't know on reflection.

Best wishes

julie

Not what you're looking for?

You may also like...

New To this site

Hi, Sorry If this reply to this post is too long First I would just like to say that my wife had a...
Highwaywomble profile image
β€’

Is this the end of life?

Please help... my husband was diagnosed with hemochromatosis when he was 60. Long story short,, he...
binxi69 profile image
β€’

Devastated is this the end?

My husband has had a cirrhotic liver and alcoholic liver disease for a number of years coupled with...
Billfury profile image
β€’

Is a Fibroscan more accurate than ultrasound?

Hi, I'm new here and this is my first post. I wish I'd found this site and forum years ago! I was...
islandanonymous profile image
β€’

Is this right??

I am trying to create a progression map in my head... So I'm going to need your advice here... The...
pear-shaped profile image
β€’

Moderation team

See all

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.