Cirrohsis

​Im really sorry to hear about your husbands problems, i am in Liver failiure so i think it is stage 4 although i am not totally sure what they call it as they have never told me what stage i am at, My Liver is increasingly getting worse and now i am in need of a transplant, my treatment has been ongoing for approximatley 18 months now and i am at the stage where next week i am veing admitted for my final tests over a 2 day period to determine if i am suitable, The transplant co-ordinator has told me that they will ring me on 27th Maech after the Liver Team have met and made their final decision about transplant, fingers crossed it will be positive.

​I know you have written your email not to hear about anyone elses problems but i have explained this to you so that you know that i can give you the information i have been privvy to over the months.

​First of all the ascites is a concern as im sure your aware and if it is of a significant amount and is causing alot of pain then he should have been booked for a drain to be carried out of which i have had 2 done and although it sounds horrible it really isnt and brings alot of relief, as well as them doing this they should also do a tap of the fluid to make sure that it is not infected, So that is the first question you need to ask, and you want a reason why this has not been done already.

​Secondly what is the Liver failiure due to ? my experience has been that my local hospital wrongly assumed that it was down to alcohol because i always used to have a few drinks after work, however i have continually to them of my family history which they seem to have ignored, when i went to the transplant hospital a few weeks ago i had to go through my history again including that of my family and the have taken alot of notice with regards to my Mum who also had Liver failiure (she didnt drink) also the fact that she was an insulin diabetic like myself, they will confirm this next week when i go to be admitted but they have said that because of this the likleyhood is that i have what is called non-alcoholic fatty liver disease, some of the blood tests will confirm this. I f your husband is a drinker then they will tell him to stop altogether and if he only has the occasional one they will also tells him to abstein completley. His triedness is another classic problem, and forgive me for saying but im sure he will agree its not like normal tiredness it is total fatigue sometime not even having the strength to pick up a cup of tea, this is mainly due to not only the problem but more importantly his nutrition, some one with this level of Liver disease should be aiming to eat about 5000 calories per day and try their best to eat every 2 hours as the liver needs fod regularly or it will start to use his muscles and this will again make his fatigue worsen.

​THE MOST IMPORTANT THING THAT CONCERNS ME ABOUT YOUR QUESTIONS ARE when you say he can become quite confused this maybe due to what is called encephalopathy this is when your bodys liver is not working proerly to get rid of the toxins by refular bowel movements, when i was first diagnosed they had me on many many types of medications so that i had a bowel movement 3/4 times a day, now i am on lactulose 30mg 4 times a day and believe me it works. If he is not having his bowels open many times the toxins build up in your system and can lead to encephalopothy, i had a severe attack of this in November last year and was admitted and was in for 8 weeks.

​I am really sorry to say this but i feel you need to know that if not kept under control it ultimatley can cause death, but he fatigue and confusion is a sign of this being a problem, he should be on Lactulose at the very least and if his problem is severe then they should be putting him on other medications for it aswell.

Please dont be afraid to ask they have a duty of care to give him the information and also yourself as long as he is happy for them to talk to you about it as well.

​He should be having regular blood tests and also regular hospital appointments with the Liver team at you local hospital, and if this is not happening try phonimg the Liver teams secretary and explain that you need an urgent appointment. you also need to ask about scans that he should be having and also a  gastroscopy which is a tube that is passed down the gullet to check that he has not got what is called varices, this is where the veins in you tummy can bleed due to liver failire and if this happens they need to have little tiny elastic bands put round them which will shrink them and heal them then the bands fall off, he should then after a ew weeks be asked to go back for another gastroscopy to ensyre that it has worked, this will be repeated when the doctor feels that it needs to be checked again, but they should be aware that this is an ongoing problem for Liver failiure patients. The doctors should at some point tell him if he would possibly be able to work towards a transplant which believe me takes many months, but rest assured if all of the above is followed correctly by the hospital and his condition managed correctly then if a transplant is viable the appointments should become more frequent.

​Now i have to apologise for the legth of this email but i have alot to say about my condition as it has been going on for a long time, at times it is very scarey not only for the patients but also the family that surround them/

​Although i have never used it there is a web site about it Liver UK i think but please do not surf the net for answers because lots of people and sites presume things when everyones body is different, you need to know the basics that ive written on here for you but PLEASE PLEASE feel free to ask for a second opinnion it is your right if you feel your not being treated in the correct manner, i obviously dont know what part of the country you are from but if you look at hospital on the internet im sure you can find alternatives, I do know that Manchester and Leeds are very specialised in Liver failiure.

​All i can say now is good luck with it all and try not to get bogged down with it, I know it seems very daunting but people are here to help if they can.

Good Luck

Helen

The scoring system in the US is slightly different to the UK system (UK forum) and I have never quite been able to match them up, as I don't think they cross over very well.

Is he jaundiced (yellow, eyes or eyes & skin)? Are they doing any ascites drain? Are they giving him lactulose to help with the confusion? Have they taken a scan of his liver and if so, have they spoken to you about the results?

He wouldn't suddenly die from it, but he could go down quite rapidly. Without knowing the details it is hard to say. Can you take someone to the hospital that would be more forceful in their questioning?

Hi Charlene,

I am sorry to hear about your husband. Helen pretty much gave all the information I would have. I have cirrhosis although I have gotten better the past 2 years. Lactulose is very important to get the toxins out and that probably is the reason for the confusion. It does work wonders but takes time, I also take diuretics to keep from swelling. I also swelled but they did not have to drain me, from what my doctors said they would rather not unless absolutely necessary because it drains the good also. It is good that he's resting because that is the best thing. You might want to ask the doctor his MELD score, 15 is when my doctor refers you to start talking with the hospital for transplants. 15 isn't when you need one, just when you need to start preparing. Also kidney function is important, so that is something you also could check on. I got very weak and sick before I started to get better, Vitas(hospice) came and were helpful in checking on my vitals and prescriptions. Your doctor might offer to contact them and it seems scary but don't be. Vitas doesn't mean someone is going to pass, I was skeptical and scared but am very glad they helped. Take advantage of their assistance and you can ask the nurse questions. Also water,water and water is pretty much all I drank for 11/2 years and lots of greens. I hope this helps and don't be afraid to ask questions and if you don't understand the answer ask again til you do. Some doctors assume you know things so they don't think to tell you so it doesn't hurt to ask. He will also have more than one doctor so make sure they are all on the same page, I found a lack of communication a lot and that they needed reminders.