Christmas

[PerpetuallySad]

Hey all,

mums chirosis continues to cause us fun each day. I’m now pretty much at the stage of forcing her to eat little and often as she is never hungry, and is never thirsty despite all of her lips cracking and her tounge swelling. When she drinks, it’s as though she is trying to swallow knives or poison. So strange - she won’t even drink 1/3rd of a cuppa tea despite insisting she loves tea and enjoys it!

she’s now on lactulose, furosemide, Ferrous fumarate, Spironolactone, Solifenacin, Amitriptyline, Sertraline, Esomeprazole.

we’ve been told her acities have reduced to a ‘mild’ level, (she’s been on these meds for 3 months now), and her confusion and tremors (HE) are less severe than before but she still has entire days where she is completely confused and dazed.

I guess I have two questions;

1) if she still has HE and mild ascieties, and drs are keeping her on these meds long term, is her liver chirosis compensated or decompensated?

2) we’ve been told she isn’t a candidate for liver transplant as her general health isn’t strong enough, and as such we are now waiting for the end. Does anyone have any insight from experience or whatever of how long that might mean? We next have an apt with her liver specialist early Jan but I’d like as much info before we get there as to be honest my anxiety is already through the roof.

[Rshc]

It sounds like her liver is still decompensated (indicated by the presence of symptoms such as HE). This doesn't mean over time it cannot be come re compensated - it can take a while. My partner was decompensated, awful fluid on his legs and stomach and taking 2 different tablets for this, now 2 years later he is re compensated and no fluid and no tablets. It can take time. I think your mum has ARLD, has she stopped drinking? This is the main thing she can do to help liver recover to some degree. It must be hard seeing her not eat or drink, have you been referred to a nutritionist?

[PerpetuallySad in reply to Rshc]

Hey

Yes it is ARLD but she’s stopped drinking, reduced on initial diagnosis 7ish years ago, and went t-total on last hospital admission in Sept this year. We’ve been referred to a dietician but as of yet we’ve had nothing back, really interesting to hear about re compensation; was that 2 years on fluid tablets etc?

[Rshc in reply to PerpetuallySad]

I would say about 18 months on diuretics and a spell of 6 months on the transplant list. He was told that if his liver hadn’t improved by 6 it was unlikely to improve further but it did and they are blown away by how well he’s done and how great his bloods are. He still has low platelets but everything else is within range. I would say never ever give up hope, just keep trying to get food inside her

[Gordon99]

It is a dilemma. How to stay well enough to survive a major operation whilst being sick and on many medications. All I can say is that I was in similar condition for three years before finally getting a transplant. I never gave up hope - even when my mind wasn’t my own due to HE etc. You have to stay positive. I was given half an hour to live as my other organs were failing, my wife died suddenly, my kids were told to expect the worst. But here I am! Several years later. I had a very long recovery period but I never gave up hope - I don’t know why. Just try to keep on keeping on.

Good luck.

[PerpetuallySad in reply to Gordon99]

Inspirational - thank you for sharing your story. I’ve just sent this info through to my family’s group chat; interesting to hear! What did you do to get better?

[Gordon99]

If I did anything it was to realise that if my liver wasn’t functioning properly then it was my responsibility to help it. So I asked myself what the job of my liver was - to remove toxins from my blood - so I could help it by reducing my intake of toxins as much as possible. What is toxic? Salt, fat, alcohol, sugar - so reduce all of these as much as possible. I looked for alternatives as I didn’t fancy a joy free life - but I DID want a life.

[PerpetuallySad in reply to Gordon99]

What alternatives did you find? I need ‘carrots’ to dangle for mum to fight for

[Gordon99]

It has been six years so I don’t remember all but I remember finding low sugar sweets useful and using pepper and other spices rather than salt (lo-salt is bad for you so avoid it). I drank water to help stay flushed.

I stopped drinking alcohol - this was helped by having hallucinations of our chancellor on the labels of bottles with his hands outstretched and a speech bubble with him saying “give me your tax”. My HE helped me there!!

I ate a lot of fruit and vegetables but I found that some doctors wanted me to avoid grapes and others said strawberries were bad. I spent a lot of time on Google!

Hospitals don’t help as they put lots of salt in their soups and always give you sachets of salt no matter how many times you tell them not to. Their procurement managers always seem to run out of pepper - I had to get my visitors to stock me up from the WRVS downstairs.

It was a challenge to choose low salt, low sugar, low fat items from the hospital menu. I was determined to try and accepted that I would have to do it myself.

As I said before - keep on keeping on, want to live - don’t let the bastards grind you down. They will unknowingly if you let them.

[Missmanor2]

Hi I have decompensated liver and fluid retention and varices been on spirilactone; lactose: frusimide and 3sachets a day for my bowels; restricted fluids not an easy balancing act and l have developed a relationship with my bathroom more than my living room in the mornings !

However l have learned that healthy eating is keyl make my own soups make most meals from scratch cook without salt and said goodbye to cake crisps and chocolate l feel better and stronger l allow myself a treat once a week a small cake or chips or chocolate. I read packets off anything before l buy it if it's full of chemicals l don't buy it of course alcohol is abig no no my liver failure was due to taking methotrexate for 12years but the damage is done l want to live and have a life so my new life style whilst restrained is a life and enjoyment.l hope your mum can find a way thru we are all on the same journey plenty of proteins hhelthyy foods and trust the meds to help but it takes time and effort but l didn't think l would make Christmas but here l am send you love and support