Dad end stage liver disease: My Dad was... - British Liver Trust

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Dad end stage liver disease

Roomwithview profile image

My Dad was diagnosed about 30 years ago with Non alcoholic steatohepatitis. September 2016 had a massive bleed and been in hospital 4 times since. He is home and has been since Dec 2016. He does not want to go back into hospital, which I totally understand. He is not able to have a transplant and has a no resuscitation order in place. Because of his Dr asking questions he is now off rifaximin, still on lactulose. Since coming off rifaximin he is slowly going downhill. When I asked why he was taken off the rifaximin, my Dad said that his Dr had not ever prescribed it and it was very expensive. (My dad has since said he does not remember telling me that). Dr wrote to specialists and they said it was best for dad to stay on it. But for some reason still no prescription for it. I am worried and convinced my dad would be better of on it, and that the fatigue will get better again, as to me he started going downhill again once it was stopped. I have spoken to my dad, and he says he is happy to trust the doc. I am worried that dad is not quite himself and does not realise what is happening. And help or stories of your own experience would be gratefully received. I am thinking of talking to the palliative nurse about this, but Dont want to go behind my dads back.

16 Replies

Hiya x I'mreplying 2u just to ask why your Dad would think you were going behind his back? It may be a case of the Doc having overlooked a further script for it. I would ask the Nurse, at least for your own peace of mind. It may well be that it could ease things for your Dad if it is actually a matter of crossed wires - your Dad & yourself should be having a peaceful time & I'm sure the Nurse will be able to discreetly advise you xxxx I'm no expert on any of this but there are people on here that are fab. I'm just trying to think what I would do xxxx

Roomwithview profile image
Roomwithview in reply to julieju

I am not sure to be honest. I suppose because I have spoken to him about it and he says he is happy with Dr. Maybe I should respect that. Just keep getting this feeling that he would be better off back on the rifaximin. I will contact the nurse though, just voice my concerns, think that would make me feel better if nothing else. I agree we should not have to worry about these things and make the most of the time we have. Thank you for you reply. I feel on my own regarding it. My mother is not well and doesn't take it all in, and both my brothers live abroad, so down to me really. It is tough, but we are family and I get on with it. We have carers in twice a day, and they are wonderful. Thanks again. :)

My Dad is 80 & has Parkinsons Disease which is steadily reducing him to degenerating physical difficulties daily. He went into Hospital in October, a Nursing Home for "rehab/physio " & was then discharged to come home. He fell within 2 days, back in Hosp & now we're looking at permanent Care Home. My sister & I have fallen out with each other yet again. He was initially diagnosed approx 7yrs ago & our lives have been taken over with looking after Dad.He won'the have a Financial Assessment . ...... etc. We have had to spk to people behind his back because we"be had no other choice. Long story, so sorry for rambling. You do what's in your heart. Do what you think is right & you spk to that Nurse xxxx

Rifraximin appears to be a controversial drug. You're not the first person on this on this forum to question the Dr's motives for taking patients off of it. When I was ill I was not prescribed rifraximin until I was hospitalised, but I'm aware of other patients who take it routinely as part of their outpatients treatment before transplant assessment.

I know it's an expensive drug as I was made aware of this when it was prescribed, and I wonder if some of the issues are who does the prescribing? I think it's harder for a GP with a much lower budget for drugs to prescribe expensive drugs, than it is for say Kings hospital who I've been told have an enormous budget.

So if you are currently asking your GP to prescribe the drug perhaps you should try your hospital instead.

It seems to be one of the many systems in the NHS where a patient can fall down the cracks and not get the best treatment.

Thank you. Yes I saw that when going through the posts. Dad was prescribed by our local hospital, then when he came home I tried to order the drug, it was on his drug list so ticked it to get more. It was rejected. I had to call up and ask why. The receptionist told me that dads Dr rejected it. When doc came to see dad, dad told me Dr had said it was expensive, would wipe is budget. Dad later said he did not remember that. I spoke to the specialist at the hospital and they sent a prescription, and I was told that they were looking into it, then told that they had been told that the surgery should prescribe it. Then dad spoke to the specialist and they agreed he was to come off it! Dad said it was to see what was giving him diarrhea. He had recently lowered the lactulose for that reason. Then Dr got a letter from specialist saying that dad should be on it! But still waiting. Dr said he wanted to have more info on it. Still waiting. I am going to call palliative care nurse today. I Dont think it is fair for us to have to fight for this, Dont have the energy or time. Not impressed with the Dr. Sorry long post.

i don't think its fare either; all this BS about money when your dad is so poorly; its not right at all; if it helps, then he should have it, especially as his prognosis is not good from the sounds of it. xx

I would be on the phone to that Dr straight away myself and demand it is reinstated. xx

pip-lit profile image
pip-lit in reply to Roomwithview

I'm sorry you are having to go through this on top of everything, and to carry the brunt of family care and responsibility. Though not about rifraximin, my husband had something similar recently - he was prescribed a painkiller, nefopam, which actually worked and made a noticeable difference to his life, by the liver specialist at the hospital, but then the drug was apparently removed from general prescribing. His GP who is lovely told us it was due to cost - he then made a special effort to get my husband re-prescribed, had to go to meetings and convince the care trust and practice etc. But it can be done. So I would definitely contact the nurse and also your dad's GP and push a bit. You aren't going behind his back - as the one who is put in this position of carer you are doing your best, that's all, to give him all the options/chances you can. Good luck and all the best.

Peeps7 profile image
Peeps7 in reply to Roomwithview

Totally with you on this one! Cannot get GP prescription, (just off to try again) so given that I'd rather have Peeps than not we are paying £320 for four week' supply. Absurdly expensive but I'd rather pay that at the mo and have him.

room; it seem like you know what's wrong, caring for someone can involve going behind there back like with finances

rifaximin is probably expensive seen £300 a box quoted on hear

but not to use it with lactulose is not good

mrs is on both with hepatic encephalopathy and is slowly coming back

Thank you for your reply. Glad to hear Mrs is coming back. :). I have decided to talk to the palliative care nurse. :)


I am taking Rifraximin the Doctor told me the surgery could not Order it is on a list that surgery's cannot issue.

No mention of cost

I get a prescription from the QE in Birmingham on my regular visits the first one they sent a driver to deliver them to the house.

It would appear the hospital is the best place to get a supply


RoomWithA View YOU SAY

"But for some reason still no prescription for it. I am worried and convinced my dad would be better of on it, and that the fatigue will get better again, as to me he started going downhill again once it was stopped."

I am now post transplant (2 years 3 months, thanks to donor and medics)

pre tx I had horrendous H.E. for this I was prescribed Rifaxomin. I gather it is a specific antiobiotic that is focussed on the gut, the expectation is that it stops the gut from forming ammonia which in the blood stream causes brian issues (H.E.) I felt some benefit for my H.E. but I was so fatigued at that time I could (and did) sleep most of a 24 hour period towards the end. I was not aware rifaxomin was in any way related to fatigue.

Dont know if this helps..........

Roomwithview profile image
Roomwithview in reply to PCBnPBC

I am just going by what I see, it may not be the rifaximin, but the point is, the specialists want him on it. I just want the best for my Dad. Thank you for your comments, much appreciated. :)

Hi I have just been diagnosed with non alcoholic cirrhosis of the liver. It was found when I went in for bariatric surgery to bypass my stomach. The operation was stopped and reverted to a liver biopsies. The biopsies was confirmed verbally by one of the surgeons as a positive result for cirrhosis. I have had other tests but still waiting to see a hepatology consultant 3 months on.

The surgeons told me that it was a complete surprise to find cirrhosis.

I have had slightly high blood tests and a lot of discomfort under the ribs over where the liver is situated but no doctor has put 2 and 2 together and ask for any investigation. It was always put down to a fatty liver for years. This has made me quite angry. Now add in loss of appetite and loss of memory. That makes 4 indicators for liver problems. Still no follow up by any doctor for over 10 years. So why is it a surprise when cirrhosis is found!!!!

Anyway a point I would like to make is that where the liver is not being effective at filtering the blood, toxins remain in the blood and travel to the brain. This can cause memory loss and confusion.

Has anyone indicated the confusion over this drug and whether your dad remembers anything about this expensive drug, is being caused by the cirrhosis. Please question any confusion and question when your dad may have forgotten crucial points in his care. It could be another cirrhosis symptom.

As for my care well it seems that once again I have been forgotten. My bariatric surgery was first discussed and applied for over ten years ago. I have had to jump through so many hoops it is a joke. My liver is yet again another hoop. The solution to my fatty liver is the very surgery that was stopped.

Anyone else would have given up years ago. Me I'm stubborn but hey if it keeps going the way it is I am going to have a huge compensation claim against the NHS as a whole in the very near future.

I wish you luck with your dad. Please do not give up on your dad as he is being failed by the system that is there to protect him. Don't allow your dad to give up. Mental confusion and exhaustion is the cirrhosis. My father passed away a few years ago. He had had enough of his illness (lung disease) he did not realise his heart was struggling too. He got his pacemaker too late.

Seek independent advice on the expensive drug. Get a second opinion. A DNR is also no excuse for doctors to stop treatment either.

Good luck


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