Advice wanted please.

[NanaL]

Hello all, newbie here, my husband diagnosed with cirrhosis about 4 weeks ago, he is extremely tired all the time, not eating very well and has lost a lot of weight, he recently had bands put on varices in his throat and ascites drained from his abdomen. Is all this normal for cirrhosis? Does this sound like end stage cirrhosis I feel as if I am in the dark somewhat would be grateful for any advice.

[addiej]

My husband was diagnosed with alcoholic hepatic cirrhosis in December of 2014 he has his good days and his bad he went from wearing a 3 xxl to wearing a Large in clothes he was 225 lbs in march to 179 lbs in July he is in end stage cirrhosis

[addiej in reply to addiej]

My husband is now in his first hepatic coma it came on over night I keep praying that he's gonna be OK it doesn't look like transplant is an option

[NanaL]

Thank you dckimberley for your reply he had 7 litres fluid drained I am giving him small meals all homemade and no or low salt and trying to encourage him to snack without putting pressure on him. He is 76 so to old for transplant. Thanks again for your reply it was very helpful.

[Hidden]

your advice and thoughts are always a good read ...i have stopped the fortysip but i think i may ask for some this week ,,as i have to get some meds ,,nutrition is the key but it is hard to start a new diet ,,,,im struggling but ill get there .....always good to hear from you and all those newbies i hope read your blogs all the best matt

[dckimberly in reply to Hidden]

Billionth, yes! It can be hard to get the right nutrition! Unless we are rich with a private chef! Lol

Many days I don't have the energy to cook! Ugh. And I do love fresh fruits and veggies! But the problem then is the calorie content is low! So! Lol

It can be a fight!

I try to have an egg everyday, or at least one protein. I also get those gourmet pre made salads from M&S or Tesco. I check the ingredients. But some of them are really healthy,Mike the super foods. That with some nuts and cheese and fruit platters. I can prepare that ahead of time. I love pasta also. And fresh bread with a little butter. Sometimes soups, but the fresh kinds, not the canned. Another problem is healthy food is more e pensive! So, that can make it so we have a harder time getting what we need.

Good to hear from you! And cheering you on!

Xxxxxxx

[Hidden]

Can I just say that I have had varices banded a few times now and have NOT been told that I have end stage liver disease. My fibroscan score is such that it indicates fibrosis has progressed, but only just beyond fibrosis. However, after the last set of banding, within a couple of weeks I was feeling much better and in fact now, I feel better than I have done for a while. I don't have ascites to my knowledge.

So I have to disagree (for once) with what dckimberley has written. I am not at the stage of being referred for a transplant (having asked my consultant recently) and so I hope that things remain this way for a while to come.

You really need to get specialist advice and ask very direct questions. Go armed with a pad and paper and questions already thought through, because you will tend to forget in a consultation. I have AIH, so have to rely on medication to keep things in check.

[bobbycat in reply to Hidden]

Me too...I was told I am only stage 1 cirhossis Even though I had a bleed and was in hospital with varices. I have PBC ..autoimmune condition. It is unusual for early stage to bleed but it happens.....there is no hard and fixed rule.

[Hidden in reply to bobbycat]

Thanks for your post bobbycat- it is reassuring, although obviously I hope that you get a speedy improvement. Reading some of the posts can give you an unnecessary shock. AIH is also an autoimmune condition. I had a bleed too and was told by my consultant I had been unlucky!

[bobbycat in reply to Hidden]

Yes none of us are doctors and assumptions shouldn't be made. Good luck to you.

[Hidden in reply to bobbycat]

Seems like we've corresponded before! Hope you are feeling better now after the unpleasant stay in the hospital

[dckimberly in reply to Hidden]

please see my reply above.

thanks!

[Hidden in reply to dckimberly]

Yep- read it! I have to admit I found reading your first reply alarming and would have been straight onto my GP if it weren't for the fact that I had only recently seen my consultant and there was no mention of end stage liver disease. I try to err on the side of caution when listening to others' descriptions of symptoms etc, especially since I thought I had understood my own condition quite well, but after joining an AIH support group on Facebook, I have since discovered that I have so much more to learn. I also know someone who has developed AIH recently and their development, progress and treatment has been very different to mine (they are treated at the same hospital and we used to be neighbours!) I read a lot of your posts and know that everything you say is said with the best of intentions, so my response is not intended to offend, but all the same, I was shocked to read your diagnosis, since my instant reaction was "is there something the consultant isn't telling me?"

all the best

[dckimberly in reply to Hidden]

To be perfectly honest, when I read her post..what I thought I was seeing is her saying , ok, all this is going on and the doctor says it's this. Could that be true..

Does that make sense to you guys? I read it as she had already been told, because of these symptoms and wanted out opinion as to what her doctor has said. So I mis read her to begin with.

But I think I still would have answered it the same way.

Only because I've never heard of anyone having both those things and not being in end stage (which also can go on for years)

Its funny, I ALWAYS say I'm not a doctor, lol and this is my own experience. And actually, I just re read my post and I DID say that.! That we're not doctors.

I certainly did not mean to upset anyone..if I have, I am very sorry.

I don't have all the info out there. I only have my own, and what Im learning at clinic, and with close friends who have been transplanted or are on their way to be. (god willing that phone will ring)

And now I'm learning what it's like to have a transplant fail! So! lol

I have to laugh at myself. This kept me up most the night..I was so upset I gave someone wrong info, or did not say this is my experience only. Or that I might have hurt anyone in anyway, or upset them.

I think I need a bit of a break.

I have other things that I should be focusing on this coming week.

Maybe that will give me the breath I need to pause. And think about how I answer things.

xx

[Hidden in reply to dckimberly]

hi dckimberley, many of us are in a fragile state by the time we find a site like this and no doubt it is possible for any one of us to read things differently than they were said, since we cannot see the person or hear them speaking. I read the post differently to yourself, since I did not read they had been told it was end stage. Anyhoo- as you say, we could probably all do with a bit of a break and my absence from here will be necessary anyway since I have visiting family to attend to.

I really hope that things improve for you and your health and I know from your previous posts that everything was said with the best of intentions. Thanks for your response, I appreciate you taking the time to do so.

Best of luck to you

[NanaL in reply to dckimberly]

You did not upset me, thanks again.

[cazer]

Hi nanal..think he is probably end stage..have you been told if hes decompensated or compensated....de.comp is when the liver us no longer performing the necessary stuff.im 52 and have varices porta hyper tension and struggle to keep myself warm.nausea and sickness are also problems as is sleepiness.im sort of a but nicturnal but then could sleep for hours in the morning and struggle to stay awake.

I do eat little and often that helps wuth naysea also have biscuits first thing as this takes away sicky feeling.even in the night if im awake .let him eat what ever he fancies except not too much fat as it will pass straight through.

Just do whatever you can togeather to enjoy each others company even if its a little drive then a tea or coffee.

Anythimg physical will make him feel worse but it is good for both of you to get out.my very best wishes cazer.

[bobbycat in reply to cazer]

hang on here....we dont know he is end stage yet!

[cazer in reply to bobbycat]

Hi bobbycat as you can see i did say i think....i also asked wether he is compensated ir decompensated....which is sometthing else that would give an indication of where he is.

I think this lady realises this is a site which is written on not by doctors or medics but ordinary people living with difficult conditions ourselves.

I dont think anyone is saying varices equals end stage but lots of symptoms togeather may idicate that.

As kimberley says we can only go by what weve been told ourselves.

I have varices no ascites poor appetite nausea very sleepy cant keep warm unless its really warm and have been told im borderline to go on transplant list...so am end stage.

I apologies to nanal if ive given bad advice or the wrong impression.cazer.

[NanaL]

Hi Cazer thank you for your kind reply, have been told liver is decompensated I was also advised to give him high calorie foods plenty of cream etc, guess that's not good. Will give him whatever he wants. We are taking each day as it comes, thank you again and best wishes to you. NanL

[bobbycat in reply to NanaL]

Please see my and mc1189 replies.

[cazer in reply to NanaL]

Hope i didnt scare you i got the impression you just wanted some honesty as best we can give.i wish you calm and any enjoyment in the little things you may be able to do togeather.

Im 52 and hope to get on transplant list some time in the not too disrant future.lm sorry he wont get the chance if this.

I dont worry for myself but my youngest son is 17 i was first ill whilst pregnant with him so ive had a long time to get used to it all which probably makes me too loose with the facts.best wishes and apologies again.cazer.

[dckimberly in reply to cazer]

Cazar,

❤️❤️❤️

Thank you. And don't worry sweets, you WILL be on it, I just know it! I least I keep hoping so anyway! What I don't hope is that you have to feel terrible to get on it.

Good to see you on here, it's been a couple of weeks? Has it? I was wondering where you where!

Xxxxxxx

Kimberly

[cazer in reply to dckimberly]

Thanks hun been a bit off talking to people! Also we had a wonderful hol...which we shouldnt have spent plastic on...but none of us know whats round the corner!!!

We went on a cruise the consiltant pulled a lot of faces but eventually said ok.i think he realized i knew that if a varice burst out in the sea i might not have time to get to land...but i survived to tell the tale !!!

Our youngest son was with us(17)and he had a brill time as well.

Its back down to earfth with a bump and trying to find something to focus on.i do sing in a choir but even though i sit down its feeling well enough to go out and managing to stay alert enough to concentrate but youll know all about that

How are you doing ?are you still having frequent drains thac must be pretty grim and painfull?

How are you keeping your mind busy as im sure your health is bad enough to stop u doing most things

Hope you dont think i said too much on this end stage buisness but i think i was honest from what ive been told.much love cazer.

[bobbycat]

Sorry I disagree....Having varices does not always mean end stage liver....nor does draining of the stomach etc. You will find many people who have lived many a year with both. a consultant is the best person to decide on this.

[dckimberly in reply to bobbycat]

no problem. I was told by my docs in America & the UK that both of these are part of the 'Decompensated" liver.

I was told my liver was decompensated and was in end stage. They said that certain illness show the liver is decompesated. Varacies and Ascites were two of the top ones! So I assumed the two went hand in hand.

shrugs

But your right, thats my story! Everyone has their own. Liver disease is a very personal and individual thing.

I had both of these issues for three and a half years and then was transplanted. At that time I was very very ill.

But your correct! Let your doctor tell you that.

Sorry Nanal..I should of said this was MY experience with it and this is what I was told my the doctors in the US and the UK.

At the time, no they did not mention anyone else! lol! Just Me!

cheering you on!

[NanaL in reply to dckimberly]

I'm sorry to have caused all this controversy not expected to be sure, however I am very grateful for your reply and all the replies I have had, helped me no end, you are very kind and I wish you all the best,

NanaL

[dckimberly in reply to NanaL]

Oh no! That's ok!

Just a bit of disagreement!

And that's ok! Better for you to get the right info.

Now that you've said he has A decompensated liver with those things, I do feel better about my response!

But the Doctors will know!

Oh, and ask them if you can see the diatician, ok? Are you going to a hospital clinic for appointments? If so, they often have one there. At Addenbrookes, where I go they have a couple of them, and they can teach you so much! That along with prescribing the different supplement drinks we take!

Again, no worries and please don't let this stop you from coming here and asking for help, info or just letting us know how your doing!

I'm going into hospital next week to get a Tipps shunt put in. That's for my ascites. It's a wire that acts as a bypass to hopefully stop it the fluid or slow it down.

I think I still have the original dietary restrictions etc that they gave me in the US when I was originally diagnosed. I was so lucky..they hand patients that over there who are sick with liver disease. I'll try and find it and get a copy of it. Then I can always send it to you in a private message if you like. But only if you think might need it, ok?

Thanks for responding!

Good Luck!

Oxoxoxoxoxo

Kimberly

[NanaL]

No didn't scare me, helped me to realise what is happening I will ask more questIons next time I see the Doctors. Thank you again for your kind response.

[dckimberly in reply to NanaL]

I hope you get the answers you need!

And good luck. Pill be thinking about you and your dad!

Xxxxx

Kimberly

[cazer in reply to dckimberly]

So sorry to read you had a sleepless night.dont beat yourself up we both got the same impression of the condition....its all the things togeather isnt.

Ive come to realise only in the last 6 months that some new symptoms are more significant than others e.g..bowel and urine and being soooo sleepy that if i dont get up out of the chair i will fall asleep!!!

My hubsband was embarassed that i was discussing my wee colour with consult ...ha ha but i said to him its shows change in how my system is working or not !!!

I think he realised it was important.

Please dont be upset with yourself and dont disappear... your wrote nothing wrong.

Even diff consults disagree sometimes...one of mine said i was fine to have major surgery.not liver then qe said only if it was life threatening and unavpidable.then the the gastro one said i was de comp so you just cant win..lol.much love cazer.xxx

[dckimberly in reply to cazer]

lol. no you didn't say too much. Oh, and tell your hubby your SUPPOSED to tell them things like that! All that is super important. Tell him if he's embarrassed just cover his ears! lolol. Tony is pretty good about that. I think because he wants to know everything and asks his own questions, states his concerns, etc. And that's good! I forget sometimes, or we both hear different things. He tends to focus on the good, me the bad. I like to be prepared!

And yes! I'm surprised you got on the cruise ship! Ha!! Thank god nothing happened. I just had to have a letter written about my condition, etc. and one of the things he wrote was I was forbidden to fly and also could not use a board boat since there was no way they would be equipped to help if a varacie should burst!

Weird huh? Still, I'm so glad you got to go.

And I fell asleep in my chair everyday it seems!

xooxox

[cazer in reply to dckimberly]

Not allowed to fly but went from southampton...i think it was a close call....his face said it all...i think if it had been a diff consult it could have been a no.the insurance was horrendous but we just thought its was now or not for a very long time.

Sorry you didnt get to go if id know i could of hidden u in luggage as no weight limit ha ha.

Two ticking time bombs togeather !!!have u had a bleed and are they 2or 3..mine are 2 but no bleed as yet. Love me.xx

[cazer in reply to dckimberly]

Tjink i might have written too much !!! X

[cazer in reply to NanaL]

So pleased i didnt as its easy to get carried away chatting in the middle of the night.

I think the consultants sometimes leave us to fill in gaps at appts but they assume we understand all the terms they use but if its all new it can be baffling!

They also often cant give accurate epectations as its kind of how long is a piece of strimg.

I found knowing what i was dealing with helped me immensely....if i knew the worst i could deal with it and it took away a lot of the fear..but everyone is different.

Kimberley has loads of knowledge much more than me but im more than happy to chat if i can b of any help.

Hoping you can find something pleasant to do in the wind and rain today.

Having said that are you in england..

I am in the s.west and its blowing well.!!!

Best wishes cazer.

P.s. have they given him anything for nausea..i have metoclopramide whenever i need it and it takes away that horrible yucky feeling..its like having morning sickness24/7...i eat custard creams am before i try and get up.because the liver is no longer storing energy very well eating something and waiting for it to be digested seems to stop me feeling as rough.

Also if you do manage to get out i eat a starter instead of a main and that goes down easier.

Half the trouble is if someone asks you what you want to eat you might fancy something then half an hour later you dont feel able to eat it.

Sometimes a jam sandwich is all you can face.you sound like you are doing a grand job with his meals etc but dont be upset if he cant eat them sometimes.

Sorry have waffled on again.x cazer

[cazer in reply to NanaL]

Nanal please dont be concerned that us old timers occasionally clash heads.....its unfair that you got caught in the back and forth all well intended of course.

The main yhing is that you are more in the picture .please dont hesitate to chat on here if you feel happy to...everyone really is very supportive of each other...somestimes we have a good moan or sound off when not coping very and we all understand how it feels it really is a great suport.i yhink people take turns in being up or down and you feel you are not alone.best wishes.cazer

[addiej]

Go on the Internet and read everything you can read on cirrhosis because then you will know how to go at these doctors that don't tell us nothing