Stage C end stage liver disease - British Liver Trust

British Liver Trust

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Stage C end stage liver disease

Dylant12 profile image

Hi we are new on here my wife was diagnosed with end stage liver disease last July/August 2020 after 5 weeks in hospital she came home in September where I have looked after her trying to make sure she eats all the correct foods etc and takes her medicine. I feared the worst after talking to doctors before we left hospital but my wife has gained weight after losing so much whilst going through treatment etc that we are feeling more positive now but she still gets very tired in the day with itchy skin and sometimes severe ache in her back if she tries to do too much but she has stayed off alcohol for nearly a year now and her recent ultrasound was clear but I am worried about the itching and her poor sleeping is this common ?

18 Replies

Unfortunately it is. My husband also has itchy skin and this is a result of bilirubin build up. I assume she has jaundice.

Dylant12 profile image
Dylant12 in reply to KasiaC

Thank you kasia fortunately she has no signs of jaundice at present.

Trust5 profile image
Trust5Administrator

Hello and welcome to this forum. I hope you will find it helpful and supportive.

We do have several publications on our website which you may wish to look at - apologies if you already have:

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/?s...

Hopefully your wife has an appointment coming up soon as important to discuss the symptoms you mention - itching and sleep problems.

We do have a free helpline if you would like to speak to one of our liver specialist nurses. It is open Mon- Fri 10:00 - 15:00 0800 652 7330

regards

Dylant12 profile image
Dylant12 in reply to Trust5

Thank you for this unfortunately with covid we have not heard back from the hospital lately and with so many cases of the disease locally my wife is reluctant to visit to hopital but hopefully she can get some more tests soon.

Dylant12 profile image
Dylant12 in reply to Trust5

Hi Trust % ,thank you for this, we will see how the next few weeks go in order to chase up and seek another appointment.

Hi! Congratulations to her staying away from alcohol! After my diagnosis I developed itching...Not Fun!!! However, after 6 months of itching, I itch no more. It's been over as year since I've had that. Stay positive and keep on being healthy!

Dylant12 profile image
Dylant12 in reply to Katewaj

Dear Katewaj thank you for this, it gives us so much positivity to read this and reading your story too, we are so glad everything is working out well for you, my wife was so poorly this time last year we feared the worst with her losing so much weight with her legs swelling and the ascities etc but after leaving hospital last September she has made massive strides gaining weight and eating well but obviously because of covid we have been unable to go back to hospital except for an ultrasound scan a couple of weeks ago which was clear we are feeling more and more positive each day and hoping to go back to hospital for more test soon now that we have both received our covid jabs, fingers crossed , take care , thank you.

Hi, fatigue and itchiness are common with liver disease especially when it deteriorates. Keep on the road you're on as weight gain is a great sign the liver has recovered somewhat. The liver is an incredible organ but is nearly always forgotten and abused. Alternative medicine has been key to me with my disease. If you can try reading Liver Rescue (Medical Medium) Its an education. I hope your wife gets better....

Dylant12 profile image
Dylant12 in reply to alexpbower

Thank you for this, yes I keep explaining to my wife it is a long road but the positive is, she has made great strides so far , this time last year I thought we would lose her and again in September after talking to the specialist who didn't have the best bed side manner which upset my wife and didn't give us much hope for the future. However, things are very different now that has led us to wonder if all these doctors are wrong in their diagnosis or is this the calm before the storm its very frustrating not knowing but from day to day life my wife is certainly having a much better quality of life than this time lastyear!

laura53923 profile image
laura53923 in reply to Dylant12

Please don't allow your wife to take any medication which has not been prescribed by the doctors, alternative medicine and suppliments can damage a struggling liver even more.Best wishes to you both.

Laura

Poor sleeping, weight loss, itching, tiredness are all symptoms of cirrhosis, along with loads of others, you will gradually learn more as you go on. I was admitted stage c end stage with pneumonia and at one point given a few days, that was end 2017 and me then and now are very different. Hopefully you will find as time goes on that some thing get better. I no longer itch, im not yellow, ive put weight back on and my sleep is in the main great. Some new things have come along like pain / numbness in the feet but all things considered in 3 years ive gone from stage 3 decomponsated to compensated and every chance of going on for a long time yet. The one thing id say is that its a long haul back to a feeling of near normality, whilst going though things try to either ask questions on here or of your doc, not google, that place will have you mad in no time. So, a lot of waffle aside, a quick answer to your question is "yes"

Anyway, ask anything of anyone here, i found this site a godsend and still do

Chris

Thank you Chris, I am so glad you are feeling much better and this is such a breath of fresh air to hear as both myself and my wife were convinced that the news we received before she was discharged last September made us feel like she had only months left to live. Obviously, we have tried to be as positive as possible during the last seven months and making sure she maintains a healthy diet etc and have lived everyday to the full as much as possible during these difficult times, but all our friends keep commenting on her progress and saying surely the doctors have made a mistake in their diagnosis. If I hadn't witnessed how ill she was from the jaundice and edema/ascites having up to 8ltrs drained from her stomach on two occasions and 5ltrs just before she came home in September after her endoscopy with nothing since and her medication keeping everything going well so far. She does have periods of forgetfulness and confusion and also gets very tired towards lunchtime and very often has about an hour or so sleep after lunch which is fine till about early evening when she is tired again about 7.0pm and usually goes to bed then which I think is why she is not sleeping through the night as her body probably has rested enough by then causing her to have long sleepless periods during the early hours. I have suggested she try staying up later in the evening but it is difficult for her as she get uncomfortable and prefers to lie in bed rather than sit on the sofa. Onward and upwards. fingers crossed!

Your story is very refreshing! Can you let us know what things you did to help get back to compensated stage? Also do you mind sharing what exactly caused your cirrhosis? Im starting to realize that there are several underlying reasons that can have an impact on the healing process of cirrhosis. Thank you for sharing such light!

Hi, my cirrhosis was caused by alcohol and ill be honest the main thing i did was cut out drinking. I don't miss it at all and life's good at the moment. I eat ok, not exactly 100% healthy but ok, avoid over the counter medicine etc and do exercise, again not 100% fit but i try. As i said its taken a while to get back to the new "normal " but its not all gloom and doom. One thing i will say is life pops you lots of little suprises, some good, some not so good, my latest is i need to have 2 varicies banding, been lucky to not need that so far so its a new twist in the road

Thank you so much for sharing this! Crazy thing is, I havent experienced acsites or any of the usual symptoms ive read on here. I am now concerned of liver "c" . so much and its all so confusing. My chronic fatigue, flushing cold of the legs , dizziness, fullness underneath rib cage after eating, spleen feels full too. Ugh so lost and scared at this point. Ive changed my diet stopped drinking cold turkey , exercising and just not getting any answers here in the US. :(

Hi Chris one other thing I forgot to mention is my wife developed anvirritable cough which has been bugging her for sometime now. She had a covd test so we know it's nothing to do with that. As things in our local hospital are easing now she has just received details of an appointment to see her lives specialist and also had an appointment with our local GP for a blood test prior to that which is a good sign we are getting somewhere again. Very wishes

Hi Dylant12After reading your post I just want to add that your wife may want to mention to consultant her severe back pain. Mine turned out to be multiple fractures spine caused by developing osteoporosis from the side effects of one of the drugs I was taking. It’s improving now & am almost straight & walk every day since having my transplant. I also agree with Laura ref the alternative medicine. If you decided to try any you MUST tell the consultants as some could interfere with results etc.

Wishing you & your wife best wishes

C

Thank you Flowergirl24, my wife has been on medication for pretty much 12months now , the GP said there maybe side effects which was why they wanted to take regular blood tests etc but with Covid we have struggled to get appointments with our local hospital and surgery being so busy. However, we have an appointment for blood this week on Wednesday so hopefully we will start to get back on track with everything now. She is not taking any alternative medicines just the ones as prescribed, which is quite a few each day plus the lactulose which tends to upset her but we realise how important that is too! We are hoping to have a good chat to the liver consultant in the next week or so as we haven't been able to since last September ! So glad that all is working out well for you ,best wishes to you going forward. D

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