Compensated liver - cirrhosis symptoms 15 months post diagnosis

[Nyork10]

Hi

I'm just after some advice - I was diagnosed with cirrhosis in November 2016 my liver was decompensated upon admission, i had spider novei on my chest (apologies if i've spelt that incorrectly), jaundiced eyes and portal hypertension I did not have ascites but I was put on spirolactone (100mg initially now I take none), lactulose and rifaximin. I still take rifaximin, thiamine, ranitidine, propranalol, ferrous sulfate and pre-gablin (i was on gabapentin but aftet discussing with my GP switched to pregablin as the gabapentin was causing acne and weight gain).

My liver consultant is excellent, I am lucky that I am under his care he is really happy with my progress and my liver is now compensated. Initially I was put on the liver transplant list as a precautionary measure but I have been taken off after assessment at the Freeman Hospital, Newcastle.

I don't know if I'm overreacting but in the past 2 weeks I have felt really nauseaus, im itching a lot (which i didn't experience as one of the symptoms of cirrhosis), my abdomen is bloated and i get exhausted walking up the stairs to the point where I am nearly out of breath.

I didn't think everything was going to be rosy now my liver is compensated (i know the scarring won't heal), i don't drink alcohol (this was the cause of cirrhosis) and watch my salt intake - i have never smoked.

I was eating a satisfactory amount up until a fortnight ago and my diet incorporated fruit, vegetables, some carbs, dairy, fish, chicken and occasionally red meat (I struggled eating this prior to cirrhosis).

I know fatigue is something that people with liver disease experience (I certainly have), I also have a rare neurological condition (which isn't liver related) that also makes me extremely tired. Is it possible that at this stage people experience more of an onslaught of things as a result of cirrhosis - the breathlessness and swollen stomach (which isn't hard), lack of appetite, insomnia and itching are all starting to concern me now and I wondered if anyone else has suffered from these despite liver compensation?

[freddie76]

Sorry but it does sound that you may have become decompensated again.

You should go back and see your consultant again

Can in I ask what your neorological issue is

[Nyork10 in reply to freddie76]

My condition is guillen-barres syndrome I was in a wheelchair for 8 months unable to walk, so along with cirrhosis it certainly hasn't been the easiest time. I didn't drink an excessive amount, more than I should have and I was using it as a way of coping with extreme stress but as I've found out from my consultant and from people on this site (which I think is such a helpful site) it doesn't take much in terms of alcohol to get cirrhosis.

My next consultant appointment is a months time, the last time I had bloods taken was mid January and they were all fine.

[Kristian in reply to Nyork10]

I sort of agree with Freddie. Make an appointment with your GP as soon as you can to discuss the best way forward. They will probably speak to your hospital anyway to see if you should get checked out any sooner. They may even arrange for you to go along and have some tests done just in case. Best get it checked out and take it from there.

[Nyork10 in reply to Kristian]

Thanks I managed to see my GP today and they've taken blood samples so at least if there is anything internally this will show.

[BSA-3]

Hi, Nyork, I can only repeat what a Consultant said to me once, and that is " Sorry but you're going to have to get used to it." A bit harsh, perhaps, lol, but very true. A bit of a daft analogy is to think of your body as like a car with engine trouble. The car will get you from A to B, but it really struggles and isn't running efficiently. That's what your liver is doing. Take care.

[Nyork10 in reply to BSA-3]

I quite like that analogy! Its a straightforward way of describing it and makes sense.

[BSA-3 in reply to Nyork10]

Thank you, Nyork10. I would like to stress though, that feeling pretty rough is not to be confused with decompensation and I would call an ambulance,or go to A&E pronto if I was vomiting blood, had ascites etc, as I'msure you're aware; time is of the essence in that situation. Take care.

[Nyork10 in reply to BSA-3]

Yes thanks, if I was vomiting blood or if I was passing blood I would go straight to A&E.

My GP thought I had done the right thing contacting him first (i've had the same GP since I was diagnosed with cirrhosis) the nurse has taken blood and if there is anything of any concern I will be contacted tomorrow.

Unfortunately with my neurological condition this makes me feel nauseous and very tired but unable to sleep and its difficult to determine if i feel like that because of Guillan-Barres or if its my liver. Thanks for your advice though appreciate it 😊

[BSA-3 in reply to Nyork10]

Anytime, take care.

[Hidden]

I was diagnosed in August of last year due to varies bursting PH; I am compensated never was decompensated. The only issue I have is every now and then insomnia, which I take care of with melatonin and plenty of night sleep. If I don't sleep enough at night, I do have to deal with fatigue in the afternoon. Good luck and feel better soon.

[Nyork10 in reply to Hidden]

Insomnia is the worst especially when you have work the next day!

I have been to my GP he's taken full bloods and checked breathing etc, better to be safe than sorry!

[Faithfull]

Ain't got answer as I'm in the same state 3yrs abstained drink and the rest stuff years ago but yr ago early cirrhosis now I'm iller and been discharged back GP then get fibro scan last week I'm going hospital I feel so ill I have neuro in head meningomia

Ears keep popping head pressure and all same as you I

Can't stand another night like it sorry but it's your not on your own I no the feelings and feel for you x

[Nyork10]

You were diagnosed with cirrhosis just a year ago? Are you still under consultant care at your hospital as you mentioned you've been discharged back to your GP?

I see my consultant every 3 months and I have an ultrasound scan every 6 months, the hospital want me to stick with my consultant for an indefinite period.

I have ENT problems as well as a result of my neurological problem - its not much fun is it?! Do you take anything to help with the popping in your ears? I sometimes put on white noise on my ipod and that can block it out but you have nights when you struggle!

I've got a lot from this forum already, you certainly don't feel as if you are alone 😊xx