L-Ornithine L-Aspartate

[Zoe2022]

My husband was discharged from St James Hospital in Leeds in September 2024. He was unable to have a liver transplant due to being too frail. He is back under the Gastro Unit in Blackpool for his ongoing care. He was on Lo-La for his Hepatic Encephalopathy which has been working well for him. He has now ran out of his Lo-La medication and Leeds have said they cannot supply him anymore and it is now up to Blackpool Victoria. They are refusing to give it to him and his GP also won't prescribe it due to not being in Lancashire guidelines. He is on palliative care and is terminal. He cannot tolerate lactulose. It makes him very unwell. Has anybody experienced this and does anyone know of an alternative. He is so poorly when he has an episode of HE and I'm dreading his next episode without medication to help him

[AyrshireK]

Oh that's dreadful that they can't even do that for you both to make life that bit more tolerable.

Is hubby on Rifaximin for his HE? My hubby was on Lactulose, Rifaximin and Lo-la in the run up to his transplant and it was only the transplant team who could supply Lo-la.

I think the issue with L'ornithine L'aspartate is that it isn't actually a fully licensed product yet. (certainly packaging on hubbies supply stated that)

Are you in touch with your local hospice? Sometimes they have ways and means of accessing things - the least they can do is support you both at this dreadful time.

Having nursed my hubby 24/7 with HE for several months my heart absolutely goes out to you.

Katie ❤

[Zoe2022 in reply to AyrshireK]

Hi KatieMy husband is on Rifaximin and was on Lactulose. The Lactulose made him so ill and St James gave him Lo-La (only after I enquired about it). We are in touch with our local hospice and they have been very good and have got his 'just in case ' medication sorted and I can contact them if needed. We now have a face to face appointment tomorrow morning to discuss his medication so I will put an update on here tomorrow. He hasn't seen a consultant at Blackpool Victoria since he was discharged from Leeds 6 months ago. Thank you for your help

Karel x

[Trewargas]

I am so sorry to hear of the dreadful situation you and your husband are in.

It seems so unfair.

If you get no luck with the suggestions that Katie has made, you may like to try the link below.

I get my LOLA from this US based company. The delivery time is around a week.

Unfortunately there will be a monetary cost for yourselves from this option.

bulksupplements.com/en-gb

LOLA has been a very useful and beneficial addition to my HE medications, so I hope you manage to source a supply for your husband.

Best wishes

Richard

[Zoe2022 in reply to Trewargas]

Hi Richard Thank you for your reply. I will use the link if I cannot get it from the hospital. He really does need Lo-La. It works well for him.

Karel

[Trewargas in reply to Zoe2022]

Hi Karel.

If you decide to use the site that I use, you will find the l kg bags work out much cheaper. Also if you purchase 2 bags at once I think you'll see the postage is then free.

Those details may be useful to you.

Best wishes

Richard

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Zoe2022

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday 9am to 4pm on 0800 652 7330 excluding bank holidays.

Best wishes

British Liver Trust

[PeterP54]

I have not experienced what you are going through, but I really feel for you both. Have you thought about writing to your MP to see if they can short circuit the system. You may not want the publicity and i fully understand that but would a local newspaper be able to apply pressure to your local hospital?

[Zoe2022 in reply to PeterP54]

Hi PeterThank you for your reply. It will definitely be worth thinking about. We will see how we get on tomorrow now that we have been given an appointment with a consultant.

Karel

[PeterP54]

Whatever you decide, I wish you the best of luck , specially with the consultant.