Lo-La

[Zoe2022]

Hi. My husband has decompensated cirrhosis. He is 69. He has been visiting St. James’s hospital in Leeds for quite some time for a transplant assessment. He has been trying unsuccessfully to get fit enough to be listed for a transplant. He suffers from HE regularly and really struggles to take lactulose. He is on rifaximin and recently started taking Lo-La (L-Ornithine -L-Aspartate), 3g, one sachet 3 times a day, from 6th August. This seems to be working well at keeping the HE at bay at the moment. He has not been taking lactulose. I wanted to ask how other patients are getting on with Lo-La and if they find it a good way to keep the HE at bay. I would really appreciate any advice on helping him with the HE. Thank you

[AyrshireK]

My hubby was on L'ornitine l'aspartate (LOLA) from Christmas time to about May of this year - he was on it alongside Rifaximin and Lactulose but in his case it wasn't at all effective. Consultants and pharmacist reported to us that for some folks it was almost a miracle cure/help for HE in other cases it doesn't help. In my hubbies case it did nothing and his Hepatic Encephalopathy got increasingly worse and we thank goodness that he was transplanted due to his HE in June.

Katie

[Zoe2022 in reply to AyrshireK]

Hi Katie. Thank you so much for your reply. I'm really pleased your husband got his transplant. I don't think my husband will be able to have a transplant . He has tried hard, gained weight and is less frail but fails the fitness tests . We are going to Leeds on September 10th to the assessment clinic. They said at this appointment in August that a decision will be made at the next appointment as to whether he will be listed or not. Because he is having frequent episodes of HE they said his liver is deteriorating. Lactulose gives him terrible diarrhea leading to accidents and being house bound. So we are trying LOLA. The consultant said it works for some but not everyone. Did your husband have any triggers that would start an episodes of HE? My husband had a recent urine infection and combined with HE he was really confused and had to go to hospital, which he hates. I've got to try my best to keep him out of hospital. Thanks again. K

[AyrshireK in reply to Zoe2022]

My hubby has had what they class mild or covert HE for years but towards the back end of last year it hit him bad and he became very unwell with overt HE.

He was practically doubly incontinent, falling, have absences, very, very confused not knowing his own date of birth, age, address, couldn't dress himself in any sort of order, sleeping loads, eventually unable to eat physical food. Couldn't say if there was a particular trigger though he did start on Metformin in November which seemed to overlap with the major deterioration. He was hospitalized with HE in December - transplant assessment in January and transplanted in June as he was teetering on the verge of going beyond transplantable stage.

It's an awful condition to cope with and witness, I was clearing up toilet accidents frequently, finding hubby crawling around his bedroom floor unable to get up and more on a daily basis.

I just thank his t/p team for pulling out all stops to get him on the road to recovery.

Has your hubby had dietician input to get him built up - my hubby ended up on nasogastric feeding and supplement drinks.

Katie x

[Zoe2022]

Hi Katie. I cannot fault the clinic in helping him to get better and fitter. He weighed only 59kg at his first assessment. He was falling over, sleeping all the time. Having accidents. Feeling sick and not wanting to eat. We had a dietician input. Occupational health gave us mobily aids. A physiotherapist visited once a week. He has improved a lot. He now weighs 72kg and is on supplement drinks. He doesn't feel sick anymore and has a good appetite. The problem we have is the HE. Did your husband remember the things he did and said during an episode ? My husband has no recollection after. He doesn't know what his name is, date of birth, what month or year it is. He eats paper and puts all sorts of items to his lips and says he's drinking. I had to higher the dose of lactulose which would then give him explosive diarrhea. Obviously there were a lot of accidents when he couldn't make it in time to the toilet or commode. A transplant is the only option to make him well. Unfortunately I don't think they will operate on him because of other problems he has like diabetes and a portal vein thrombosis. He is on warfarin for the clot. I'm just so worried how I'm going to cope with the HE now that he is having more frequent episodes. Thank you again for your help. K

[AyrshireK in reply to Zoe2022]

My hubby had cirrhosis induced diabetes and was/is on insulin so that isn't a barrier to transplant. We were battling all the things you are with regards to HE. Hubby remembers some bits of his episodes but not all. We had dietician, physio and occupational health involvement. Hubby was borderline on the percentile muscle wastage scale for not being eligible and we were battling hard because he couldn't eat at all, only keeping going on 7 supplement drinks a day.

Dieticians have told us that with HE, eating problems and diabetes it is a very hard battle to get weight on.

No issue with a thrombosis in our case.

Hubby lost about a stone from transplant so that 'reserve' is very much needed. He has started regaining weight now that proper food is going in and at each clinic for the past 4 weeks he has gained 2lb a week which is great, just need to turn it to muscle now.

I do hope you get him fit enough to have a chance. We were fortunate I guess in that hubby had been walking/cycling upto November last year ..... up to the point where he didn't know how to mount his bike and didn't have the co-ordination to stay on it. He retained some degree heart/lung health despite 6 months of limited mobility though post op he puffs and pants and has rapid heart rate with even minor exertion as all fitness has waned.

Katie

[Zoe2022 in reply to AyrshireK]

Hi Katie. How old is your husband please? The consultant is a bit worried about my husband's age , 69, and how he will cope after a transplant. They said his age is not the barrier, just his fitness level. They were hoping he would have reached the level needed by now. The HE episodes have knocked him back. His first hospital visit with HE he caught COVID and lost a stone in weight. The second time he caught norovirus and lost weight. The last time in July he was not allowed out of bed for 8 days and he lost his muscle strength again. It seems to take ages to gain muscle strength. He does exercises and we have an exercise bike but he struggles to do much. When he is well he is fine apart from the fatigue. We will just have to see what the consultant says in a couple of weeks. Thank you again Katie for your help. K

[AyrshireK in reply to Zoe2022]

Hubby is 63.

[Zoe2022 in reply to AyrshireK]

Thank you very much for taking the time to answer my questions and tell me you and your husband's journey. You have been so helpful. I wish your husband a great recovery and best wishes to you both for the future.