My name is Kelly and I am 38, my partner is 39 and has been diagnosed with NAFLD Cirrhosis 😢. It has been a big shock to us both. He has been getting more and more poorly over the last year but the doctor kept saying it was his Gall Bladder. He was getting so lethargic, and so confused. Itches like mad too!
He was admitted to hospital end of Feb and spent nearly 4 weeks in there.
They now tell us that it is CHILD PUGH B.
I really have no idea what this means? Or how bad this means it is? Can it be reversed or will he always have this? He is so young.
Also he has to take so many meds, and is always falling asleep and says random things and talks to himself when he is having a confused episode. Is this normal??
I am so frightened and can’t talk to him because at the moment he doesn’t really take anything in 😢😢 x
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Kelbelx4
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Sorry to hear of your partner's diagnosis but I guess one positive is you now do know what is going on. My hubby was diagnosed with cirrhosis completely out of the blue in April 2012 so I know all the horrors you go through at the start.
Child Pugh B is the middle sort of score for cirrhosis - it's just a calculation based on blood test results plus the presence of hepatic encephalopathy symptoms.
Whilst it is early doors just now as regards the diagnosis it is possible that they can stablise you partners health and get him healthier than he is just now.
I guess some reading you might want to do are various pages on the British Liver Trust page.
One on Non-Alcohol Related Fatty Liver Disease (NAFLD) which might indicate possible lifestyle changes that can be made to try and halt any further progression of the condition.
One on Cirrhosis that might help you understand what is going on when the liver becomes cirrhotic (I found this an amazing resource when hubby was first diagnosed).
Plus there are pages on HE (Hepatic Encephalopathy) which is probably what is causing your partners confusion, falling asleep and cognitive difficulties and also a page on living with liver disease which will give good advice.
At this stage you should research and when you go to appointments you can make the most of the time. Accompany your partner to appointments so you can help take the information in, take lists of symptoms, lists of meds and lists of the questions you want to ask - the more informed you can be the better information you are able to draw from doctors.
Hopefully some of the meds your partner is on are to treat the HE symptoms (normal treatment would be Lactulose in combination with Rifaximin). If symptoms persist and he isn't on these meds then push for them.
I know it's overwhelming at first but even from a state of decompensation (when the liver is really struggling) patients can become more stable. My hubby is still here and having followed doctors advice is doing generally ok - he is fatigued, can't work, struggles with concentration, sleep and conversation but is still doing alright in the grand scheme of things. If things were to go down hill then transplant would be an option.
Fingers crossed your partner stabilizes quickly, any further questions don't be scared to ask.
Katie, thank you so much for your reply! I am just so scared at the moment. Today he is having a real down day. Hasn’t got out of bed, won’t eat and just keeps asking ‘ why me ‘ I don’t really know what to do.
He has only been out of hospital 1 week and I have had to take it unpaid from work as he can’t be left alone. He has fallen once, fell and threw his coffee all down the curtains, and forgot he had a tap running and nearly flooded the bathroom. If I wasn’t here he wouldn’t wake up for drinks, to eat or for his tablets! X
Do you leave your hubby? Sorry for the questions x
The confusion can be unreal. Yesterday he wouldn’t get up of the sofa because he thought I was laying a concrete floor in the front room!!
I can’t see how he can work, but at the same time how can we afford this!
I am pulling my hair out.
Because I don’t know much about the disease I get worried I am going to lose him 😢😢 x
My partners Cirrhosis is non alcohol related. Thank you for the diet tip. I am trying to change as much as I can, but this is all new to us at the moment.
The confusion states - is that HE? We have been told that until (hopefully one day) he has a liver transplant that he will have these episodes. Is this right? They are so frightening.
Yes, the confusion is usually down to HE and it sounds like he needs some help at the moment. I will try and get someone in touch with you that is a lot more knowledgeable than me. Will try now. Speak to you soon. Alf
Thank you! Katie was fab too. I am just at a dead end. No one really wants to help me. Sent him home from his 4 weeks in hospital and we ended up in an ambulance 3 days later cause of the HE and they sent him back and told me to up his lactulose. We have and it’s still not working.
Does this go on until a new liver? I just want to know what our little family has got to adjust too. The kids take it all in and worry about him too 😔
I feel for you, it's a frightening situation to be in when you aren't sure what's happening. My wife told me that when I was ill she brought me a bowl of soup (I was in bed at the time) and I tried to eat the bowl and we were wrestling between us with hot soup flying everywhere. She said at times like this she had to try and humour me to get me to do what she wanted. Another time I decided that our hallway was the bathroom and an antique dresser in the hall (wife's pride and joy) was a toilet. My wife was told while I was like this that it was important that I drank plenty of fluids to keep hydrated, It's a good idea anyway. I always drank lots of water.
he could do with some bottled water or squash to drink when he is awake in the night. I say bottled because it's not so easy to spill. he really needs little and often snacks too with carbs and protein to keep his muscles from wasting. Like a sandwich, a teacake,peanut butter on toast, a yogurt , some fruit. My wife gave up asking me because I would say I'm not really hungry, She would just stick something in front of me and 9 times out of ten I would eat it.
HI kelbel The tiredness and the itching are common symptoms of cirrhosis The confusion is usually down to a condition called HE and happens when the body is carrying extra fluid (ascites). There are people on here who are very knowledgeable about HE and I'm sure that you will hear from one of them soon. My Child Pugh score was a B about four years ago, I had NASH and HCC. I am now 7 months post transplant and doing well. The best thing your partner can do right now for his health is cut out alcohol if he is drinking and eat healthily cutting out things like sugar, fat , red meats. If he is dependant on alcohol then he should discuss giving up with his doctor. He should eat meals little and often as a poorly liver cannot store energy for more than a couple of hours. 6-7 small meals a day I think is the latest guidelines for a poorly liver. The last meal at night should contain plenty of carbs to prevent muscle loss overnight. Things can start to reverse if a healthy lifestyle is adopted. Hope this has been of some help. I hope things improve very soon for your partner. Very best wishes. Alf
Hi Kelly, my hubby has a mild diagnosis of HE, he is on Rifaximin and Lactulose and he fortunately has never had an episode as severe as you are seeing with your partner.
The why me is a common reaction to this diagnosis, my hubbies cirrhosis is also not alcohol related. He is life long t-total and his cirrhosis is due to an auto-immune illness of the liver. Even after all these years he still questions why him, he was a long distance walker, fit and active, only ever 8.5 stone max in weight, worked as a welder in heavy engineering. He was feeling groggy for a while before one night vomitting blood everywhere, leading to an emergency admission to hospital and literally overnight diagnosis of cirrhosis.
My hubby was assessed for transplant in 2014 but delisted 10 months later because his condition stabilized. I am able to leave him during the day but he struggles at times with meds, cooking and such like so can't leave him for long or more that one night at the most. I had to curtail some of my away from home activities.
Has your partner been referred to one of the transplant centres? With a diagnosis of cirrhosis so severe especially where alcohol is not a factor he should be assessed for transplant or at least go under the care of a t/p unit so they can say when they think he needs assessing.
If he isn't on Rifaximin already then he really needs the hospital to prescribe that in the first instance. Combined with lactulose that should start to work. You can up the lactulose. He needs to be using the loo 3 to 4 times a day to rid the body of toxins, try fruit, coffee, chocolate if he needs an additional laxative effect.
As regards food, little and often is key - don't over face with large meals, carbs and protein are important. Eggs are a great source of protein if he can manage those.
Next clinic appointment you might want to push to see a dietician who will be able to prescribe supplementary drinks that might aid calorie and protein intake if he can't tolerate food - it is though best to get the necessary stuff from food.
It is a lot to take in just now but he can come out of this. Normally the effects of all liver ill health will go with transplant so fingers crossed they don't mess about and they progress the assessment process etc.
Keep in touch, Katie xx
I am really sorry your poor partner is having to go through all this. He's going to be needing a lot of understanding and help here.
I, like some others on here have suffered with HE and I find it's always best to try and understand what it is that's happening. You may already know most of this by now, but I'll try and explain, just in case it's been over looked.
When we all eat food, this travels down into the stomach and is broken down. It then passes further down into the gut, here friendly bacteria break down the food still further. One of the off shoots of this process is the production of Ammonia. This as you'll most likely know is pretty powerful stuff. You'll often find this in many household cleaning products, "Flash, Now with added ammonia".
Ordinarily the ammonia would travel up to the liver where is it detoxified, and then passed on the the kidneys to be extracted. It is the ammonia that gives urine its pungent smell. When the liver is damaged, it is unable to carry out some of it's 500 different functions. Because the liver is cirrhotic, pressure can build up. In the case of the ammonia, this can leak out into the blood system, and here it finds it's way up to the brain were damage may occur.
If hepatic encephalopathy is identified earlier enough and treated like Katie has already mention then the amount of brain damage caused can be minimal. The idea of taking Lactulose is to cause diarrhoea. Not very pleasant, but important all the same, as this forces the food through before it gets a chance to be broken down by the bacteria, and therefore less ammonia is produced.
Sadly it's this toxic effect upon the brain that causes these changes in moods, forgetfulness, nonsense talking etc, I personally would struggle with tension and become confused and forgetfully, this can then lead to frustration and irritably. and bring about some unfriendly words to my poor wife. Because she was able to understand what was actually going on, she knew that this was not the real me, but was in fact a chemically induced reaction. The partner, wife, husband or career who stands by a person who is suffering with HE, is in my book one of those special people who do so out of love and devotion, they are indeed the unsung hero's.
Some of the effects of HE can be lasting, and even bring about early signs of dementia. I had my transplant nearly three years ago, but still have episodes of forgetfulness or brain fog. It should also be noted that different people may display different signs and traits.
I strongly recommend the publications that Katie has given the link to above.
I hope this will help with the coming to terms of this condition. Please keep us informed of your partners progress.
Good luck to all.
• in reply to
Wow Richard what a great post, everything you have said is exactly true. I was in and out of hospital all the time with HE, I was also giving the wife a bad time. Luckily enough just like you she stood by me and helped me through the bad times. I now know that because of HE I have 25% brain damage and difficulty remembering things. I personally think HE is about as nasty as it can get, but the best advice that made the biggest difference to me was to drink at least 3 LTRs of water a day. I to was on Rifaximin and Lactulose 4 times a day and weekly drips of albumin. Kelly I know how hard it is at the moment, but the more you get to understand what's going on, it's might get a bit easier to help you to carry on. I think we are all so lucky to have partners who have and are still standing by us.
Lenny.
Oops I forgot to add, smoking and HE don't mix to good as well, it made me worse.
Thank you for your reply. I am sitting here crying at the moment. He is being so horrible to me tonight. He just sneaked out for a fag. He stopped 4 weeks ago. God knows why he did it. He won’t come down stairs, he won’t eat dinner .... snaps at me
He hasn’t been to the loo for 3 days now.
I am pulling my hair out. I want to support him, but he is just blocking me out. Tonight he said maybe he should throw himself under a car.
Just try and remember that this isn't his fault. I know it's hard, and at times it must feel like you didn't sign up for this. But please hang on in there, your not alone.
Hi kelbelx4. I'm sorry everything is so difficult and frightening for you just now. It's a big shock especially when there was no reason to think it could happen. I see you have some great replies which I hope will be a great help. Wishing you both the best at this very hard time. Take care.
I'm really sorry you are having such a terrible time. My thoughts are with you. I can't add anything on to what has been said but I'm praying for you and hope life gets better for you both. Love and hugs Lynne xxxx
Hi Kelbel - how are things; this is so very unfair and hard for you both. HE is horrible from what I am reading. You must be at your wits end honey. There are so many people on here that know what they are talking about. You need to keep coming back on here and posting. You desperately need support in finding ways to handle this.
Offering my sympathy won't help you but you chatting to the Group will.
Keep coming back and look for any ways possible to ride this storm,
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