He everyone I hope that you are all as well as you can be
We have been for the first assessment which was 20th feb where we met the dietitian and TPC.
At the moment we are waiting to hear when the two day assessment will be. Normally how long does it take you to hear.
Also he has recently developed Hepatic Encephalopathy and is now on lactulose. How long does it take to see signs of it’s going.
Thank you for all being here xx
Hi Snips
I see you are at QEHB like I was. The time between my first Assessment and the two day Assessment was nearly six weeks - back in 2018. It felt a lot longer at that time!
I am not sure what you mean by “see signs of it going”? HE is horrible and, for me at least, episodic. A lot of the time I just had brain fog and then when I had an episode it could range from brushing teeth with shaving foam, trying to put shirt on legs etc to being taken to A&E by family or ambulance. The medication sequence as it went for me as my HE got worse and more frequent was Lactulose, Rifaximin and then self administered Enemas. The latter was a last resort for me and not an experience I enjoyed 😕.
I do hope that hubby gets his second Assessment as soon as possible 🤞🤞.
Good luck to you both (I really do think the Liver journey is harder for the carer than it is for the patient).
Miles
Hi Miles. Sorry I meant see signs of the HE desreasing once unders shed loads of meds.
Hubby was admitted yesterday with increased confusion. He was attacked with lactulose and enemas bless him and they were starting to have an effect just as I was leaving. He’s in the right place.
Spookily on Thursday I was rang by QE to say that they had booked him in for next week for the assessment but between us we decided to postpone the next was when we were away for my birthday but Kev is priority so day one we will be at QE on my actually birthday. Maybe it’s a sign. That’s the only birthday prezzy that want. So fingers x’d he’s back to normal well ish for then xx
My hubby is on Lactulose, Rifaximin and L'ornithine L'aspartate for HE. He had an acute attack in December and ended up in hospital locally (at the same time his calcium levels were high, he was dehydrated and blood sugars crazy out of range). He was assessed (and listed) for transplant in January but I can't say that his HE is much improved (perhaps not as crazy as in December but still very, very evident). He's sleeping most of the time, is putting clothes on incorrectly, having frequent toilet accidents due to slow movement and not getting there in time or not removing his clothing adequately. Very much struggling with following instructions like how to get onto and use his bath lift/seat and other very simple stuff. I am having to bathe and dress him and aid him with his personal care and medical regime at home. It's an awful condition and has turned my wee hubby into a very frail little old man in the space of a couple of months.
Katie
I’m so sorry to hear that. My hubby seemed to improve after being admitted but when I saw him yesterday he was really flat not speaking or anything.
Like you said it’s so hard to see them like that.
If he was on ICU where I work we would be really concerned but the girls on the ward just take it their stride as it’s normal to them. At least I know it can possibly improve.
Typically he would have been going for his second assessment today. Now we are going in April on my birthday.
How was your hubby on the assessment day as they would like hubby to be back to normal ish because of understanding what’s going on xx
My hubby had days during assessment (and certainly when they kept him in after assessment) when he was very foggy, had feator hepaticus and wasn't with it much at all. I was there every step of the way during his assessment to help explain everything to him and help him to speak to the t/p team - this meant I was at the hospital from about 10am to gone 5pm most days.
The original plan was I was to take him in daily as they were going to do his 4 day assessment as an outpatient (due to lack of beds and the fact we were being squeezed into a week where they were already assessing 4 others) but on day two they ended up admitting him after all as they were fitting n/g tube and trying to get to grips with diabetes and how it was being impacted by n/g feeding.
I can't say he's much improved now, not as acutely HE impacted as he was before Christmas but still very much symptomatic of HE. Sleeping almost all the time now and not exactly with it when he's awake. Needing 24/7 care and just hoping we get the call sometime soonish.
Katie
Hi, I can't directly answer your question as I had my assessment as a 3 day inpatient at Addenbrookes, all in one go but if you use Facebook please feel free to join our friendly and knowledgeable Facebook page called 'liver transplant support uk ' thousands of people that have been in your situation and many that have had their transplants at QEHB.Hilary x
thank you I’m not sore if I may already be a memeber but I will look x
Hepatic Encephalopathy 
Hepatic encephalopathy
Diet for hepatic Encephalopathy
Hepatic encephalopathy reoccurrence 
