Hello everyone!: I've been reading your... - British Liver Trust

British Liver Trust

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Hello everyone!


I've been reading your posts over the last 2 days and I must say that I feel so elated. After being diagnosed with stage 3 cirrhosis nearly 4 months ago, I have sadly had to leave my teaching job and spend many, many days in bed awaiting for me to fully recover. But I won't. I can only completely change my lifestyle, diet and thinking (which I am happy to do!) My husband said that the doctors at the hospital told him that if I'd have left it one more week. The game would've been over. My husband chose not to tell me this until recently as he didn't want to scare me anymore than I was . . . and still am.

Aching joints are becoming more paramount, painful to lift my arms. Does anyone have this? Also lost appitete and been feeling sick. Doctors today at 5pm (I have made a list of worsening symtons and questions!) as I don't want to wait around. I don't like taking up appointments up but its better to be safe than sorry isn't it?

My children are living with their father as I am unable to look after them etc. All I can give them is my eternal love. I miss them sooooo much.

I would love you guys out there to let me know that you really are out

there . . !

Thanks for reading this

X x

13 Replies

Hi...was diagnosed with cirrhosis in 2012 during 4 month hospital stay after a liver biopsy...during that time had oedema...legs and body were huge.You are doing exactly the right thing by sleeping...i spent what seemed like forever asleep..or being very drowsy. No appetite whatsoever so existed on nutrition drinks supplied initially by hospital and when discharged by my gp.

But fast forward a few years of being teetotal, eating well am generally well despite non stop fatigue. So go to your gp as often as needed and attend hepatology clinics...if you are being seen by one.There is help available I.e specialist nurses.Things WILL get better IF you follow advice.

Hidden in reply to earthpixie

Great to hear from you! Drs went OK, having blood tests again and urine checked. Do you work? I just don't know what I am capable of doing!

Look forward to hearing from you.

X x

earthpixie in reply to Hidden

Having blood taken will be something you get used to😁..Not working as have 4 children 1 autistic....but I am doing an open university degree so I can be at home when not feeling so good...Would never work full time as simply couldn't.But part time would be a possibility.Then again having been so ill your priorities change and social occasions become harder.But as a teacher I would think a part time job would be something you can do...in time...I remember when discharged from hospital it would take 2 years to get back to some sort of normality IF teetotal.But you never know what the future will bring.......

hi there!

So sorry to hear about your illness.

I also had an extreme loss of appetite, especially the last year prior to transplant (which occurred a couple of months ago on Oct. 18 2015)

I had some joint pain, but mostly abdominal pain. Extreme fatigue is also very normal with us. I slept a lot..till do..lol..but I'm in early recovery mode.

Are you in the UK or the US? Do you have a MELD or UKELD score yet? Have they mentioned transplant?

I have to drink these supplemental yogurt drinks for my appetite.

I had sold my company and was pursuing my PhD in anthropology, when I got sick 3.5 years ago. I had to quit school. I hated that..hated feeling so useless..hated going to the doctor and into the hospital all the time..It was a tough transition.

This is a great site for support and learning..

I'd recommend you do NOT read everything out there online..it is confusing and often wrong. This site has very good information.

Also, Mayo Clinic, Leeds Hospital, Addenbrookes and the NIH. (Depending on the country you are in) These have information that makes sense. And is valid and up to date.

I hope you feel better soon, or have a better time of it.

Hopefully your doctors will be able to counteract some of your symptoms with medicine. I have been on pain killers for 3 years. I did not want to, but finally gave in. They have helped a lot. I alas suffered (suffer) from ascites, retention of fluid in the belly that needed/ needs to be drained. The draining helped with that. For my varicies, I was given propanonal (spelling?)

A low sodium diet is key..and drinking water to help your kidneys..but not too much water..lol..or you can get overloaded. Your kidneys and spleen often work double time trying to help your liver do its job.

The liver does over 500 things to keep the body working. It's known as the hardest working organ in the body.

Until I got sick, I had no clue everything the liver was responsible for/ helped with. It's crazy!

It monitors everything from energy, feeling cold and hot, ridding the body of poisons and excess fluid..on and on the list goes.

I don't know if any of this info helps at all! But I hope your journey includes you getting healthier and getting to have a new life again! :)

Welcome to the group!



Hidden in reply to dckimberly

Thanks for your words of encouragement,a brill start to my day! Although my back is killing again on right side! Latest bloods came back just before xmas and most levels had almost halved from being in the overload level, big time. Yesterday the Dr referred me to a dietcian and I'm having more blood tests also urine. Endoscopy on the 11th Jan. Been on propanalol for few years to reduce my heart rate.

I'm in the UK, I know what you mean re the on line info but find mayo clinic helpful. Fluid gone down loads until a week ago . what are your pain killers? Mine are codeine phosphate 30 mg. Currently taking 2 of these 4 times a day followed by paracetamol. Got vitamin b12 tablets 3 x a day plus 2 acid tablets twice a day, 3 propanalol. Feel as though I'm spending each day taking pills!! What are your pain killers. Mine aren't working as well anymore.

Hoovered yesterday so will need to spend the day in bed, how sad does that sound!? I use to be so active but by no means athletic!

Sounds that your transplant went well? What were your symptoms building up to needing one? I hope you don't mind me asking. thank you for welcoming me to the group, Kimberly!

Clare x x

Laughs at you..about the meds, when I first got out of hospital I was one 35 plus pills a day, depending on the day, plus three different liquids! It's gone down now to 20 plus the 3 liquids. The transplant went great..was In hospital For a month after. But I had to go back for 5 days, 3 weeks ago..and now I am waiting on a bed again, in next day or so, because I need a liver biopsy and most likely a bone marrow biopsy also, along with a few other things. My blood work is not too good for some reason, and showing some rejection..so we will just have to wait and see! :).

I was on codeine,, but my ascites was so bad, it became debilitating. They were draining up to 21 liters very ten days. Half the time I looked pregnant with twins, the other half, way to skinny. That kind of excess weight effects everything, so they put me on MST (morphine time release) twice a day, and liquid oramorph, when it got very bad, normally late at night. For a while there vacuuming was out of the question for me. Outside of my house, I needed a wheelchair. Not that I went anywhere..only to docs and hospital. I'm surprised they have you on the paracetamol ..that stuff is so bad for your liver. I was only allowed to take ibprophen. Most of us are like that. Your seeing a liver specialist, right? Ask about the UKeld. Even if you don't need a transplant, it helps to know where you stand, as far as how sick you are..if they are measuring you yet. If you need more pain relief, let them know. You should not have to live with a terrible amount of pain. No one should.

Waiting to go into hospital last 2 days I did a bunch of laundry,vacuumed, cleaned my studio, and my partners office..feeling super proud of me..of course I'm also veryyyyyy tired lol! i took like 4 naps..tee hee!

Well, I'm glad you felt better reading my reply..others will respond also!

We have a great group..they have really helped me so very much. Especially this last year, as I got so sick. I mean, I was just I'll. No appetite, no energy..I needed painkillers just to talk to my kids in the US. So I had to time when I spoke with them. The ascites was just so bad, since my liver was just shutting down. My ascites had all but stopped also, in the second year..but then it came back with a vengeance! It's hard to explain and answer your question. I hope that was enough. It was strange, they said my blood tests did not look terrible..not at all, but it was obvious how ill I was, from the ascites, weight loss, etc. I was very lucky..only on the waiting list for just under 4 months. Very lucky indeed!

Do you read, or sketch? Or craft?

I know for me, doing anything at all helped e feel like I was not useless. I even picked up art again..which I had not done in 30 years.lits crazy, but within 9 months, I started making money from it..lolol..like by accident! Go figure..so I'm doing that again, since I can do it from home!

Forgive long reply!

Hugs and cheering you on!



Hello 😘😘 and welcome xx

I am just poking my nose in because being ex RN - I have this urge 😂😂😂😂 I had quite a debate with Drs etc about paracetamol - and I agree with what we were told - it is safe for your liver - it is not safe and damages liver in overdose !!!!! Rob was always being prescribed 500mg (1 tab) at local hospital but as soon as he got to Kings it would be 1g - normal dose ?? They also said 'ibuprofen' was a big NO ???? But I can't remember why 😩😩 - also painkillers are limited because of 'constipation' issues and HE - codeine was cut out completely for Rob and Tramadol given instead - which didn't work 😩😩 Oramorph was not given either due to it building up and causing a scary session in resus (but was given Naloxone to reverse effects) - I still wonder what 'analgesia' is safe ?? I know that OxyCodone (liquid and tab) are given post transplant but before transplant poor Rob had 'gall stones' and was in agony and they would only give him paracetamol (one of my biggest grumps - patients should never ever be in agony) - so that was my nursey bit 😂😂

hope you find out all the info you need from this site - there is always someone around (at all times) to have a chat with or offer advice or share there experiences with you - for a lot of us - we are in this journey together ❤️❤️❤️ my hubby hasn't got a clue how to use internet etc so I report back to him about everyone - personally - without these guys I would defo be in the loony bin (or am I already there) 😜😜😜😜😜

Hi everybody.. Im new to this today, just joined.

Ive got to say how much better i feel about myself after reading all the posts.

Ive been sick with worry and quite depressed since symptoms came on about a month ago.

Ive been drinking way too much for a number of years after a messy divorce and losing the house etc.

Finally bit the bullet and visited doctors this monday, he kind of confirmed my worse thoughts, but im booked in for a UV next Tuesday and bloods the week after (need to let blood pressure tablets settle down first apparently)

Theres a lot of very strong people on here.

Its given me confidence to just take it and deal with it.

Been sober for 5 days.

Best of luck to all

Hi Mellow1

I was diagnosed nearly 3 years ago and at that point nearly didn't make it (hepatitis, liver failure, jaundice, sepsis and ascites). I had very painful upper arms and shoulders after I left hospital ( I couldn't put tops or coats on without help).

In the end I had physio, and pain has now completely gone.

I too take codeine 30mg (for hip pain). My hepatologist was quite happy for me to use this for pain relief. I also take B12.

It takes time to recover, just rest, eat little and often (nutrition drinks if no appetite) and take it one day at a time. Glad your bloods looking much better, that's a positive.

Take care, Anne XX

Hidden in reply to Anne48

Thanks, Anne. Your advise is welcomed. How are you bearing up day to day?

X x

Anne48 in reply to Hidden

Hi, I'm not too bad at moment, anxiety gets better of me now and again. My last US scan showed "effectively" normal liver and have just had MRI scan as consultant worried about my gallbladder and bile duct. So playing the waiting game which I'm not very good at.

There are so many things I could tell you about how things have progressed the last 3 years, but it would take pages!! So if there is anything specific just message me.

I did start by reading books on liver disease and making my own notes, especially where diet and supplements were concerned.

One tip on diet when you have no appetite, buy the tiny (no added sugar) yogurts for babies, they are only a few mouthfuls, but better than nothing. Anne XX


Well done!! You've made me feel not alone. I have had nothing but kind, helpful, sypathetic , warm and positive from this lovley group.

X x

I love this site and all the supportive and positive people who share and in so doing make us all tolerate the intolerable ! (is that a word?)

Happy and healthy 2016 to us all!

Picking up on Robswife's comment, is there any agreement out there on what pain killers are OK for us Liver sufferers (pre and post transplant) ?

I am confused indeed, as a result I tend to accept pain rather than risk life threatening further damage.....probably a case of no brain no pain, or fortunate that pain is not so bad.....but is there a consensus?

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