Daughter and full time carer for my mum who has Liver cirrhosis, ascites and varices in her oesophagus....

[Sam0101]

Hi everyone hope you are all well and coping well during these hard times love and prayers to all.

I have been looking after my mum for a year now due to her sudden diagnosis and rapid decrease in health.

August 2019 diagnosed with liver cirrhosis secondary to Hep B

January 24th diagnosed with ascites and on diuretics (no draining)

February 24th told that she has last stage liver cirrhosis and the prognosis isnt great.

Mum was very poorly weak sickness constipation and diarrhoea. No itching or jaundice

Past 2 weeks it's like she has no issues and keeps telling me she feels great. I am so confused I am definatly happy that mums getting better and feels good. A month back we were referred to the palliative care team and things were serious now it's like she is fine.

I'm not complaining at all but from a month ago them telling me from here her health will deteriorate to mum up and about like normal, I'm confused.

Once covid 19 has calmed down should I request them to redo all the test liver scan blood tests etc.

I'm very happy but I'm confused.

Please can someone shed some light on this for me.

Thank you

Sam

[AyrshireK]

It is possible for the liver to become compensated again. I am guessing with you there for care she is perhaps eating better and therefore getting more of what she needs into her system.

Is her Hep B under control i.e. is she on the antivirals daily? If her viral load is ok and she is eating better, being taken care of a bit then perhaps her liver has stabilized a bit and she is genuinely feeling brighter which is great.

My hubby was in hospital this time 8 years ago having suffered a massive upper GI bleed from burst varices and we received the shocking and out of the blue diagnosis of cirrhosis (F 4, decompensated cirrhosis due to Auto Immune liver disease). He was in hospital for 3 weeks and doctor has subsequently informed us how close to death he was.

In 2013 he was referred to t/p unit, assessed and listed June 2014. Delisted after 10 months because he no longer met criteria for transplant - he's gained weight, portal hypertension reduced, never any ascites, pretty normal bloods and described as stable. He eats well, regrew muscle mass and although he still has cirrhosis he is now back at the compensated stage (Stage 1 compensated cirrhosis rather than his previous Stage 4 decompensated cirrhosis).

It's possible that it is just your good care and attention has perhaps stabilized her for now and the fact she is on the necessary meds to deal with ascites and portal hypertension etc. When you have cirrhosis it's largely about keeping on top of the accompanying side effects.

With cirrhosis she should be monitored 6 monthly, ultrasound scans, bloods etc. so yes after covid make sure she is still monitored. What age is mum? Hopefully having gotten stable you will perhaps have her around longer than first anticipated. Fingers crossed for you both.

Katie

[Sam0101 in reply to AyrshireK]

Thank you for taking out the time to respond to me and give me great advice.

I left work last year may and my whole life revolves around my mum literally. I make sure I give her good fresh food everyday i try and make our daily routines as normal as possible.

Mum is on medication for her b and our last appointment the consultant said the hep b is in control.

Mum is 69 years old.

I try and stay on top of mums symptoms like her ascites and constipation or diarrhoea making sure it doesn't get out of hand before I take some action.

I really try my best to just keep mum happy.

Thank you for your reassuring words.

Mums GP is great he wants to have a chat with me every 2/3 weeks for an update which I do.

I will ask for the tests to be done again.

Its reassuring to know that liver cirrhosis can go from decompensated to compensated. I pray that is what's happening.

First time I've written on here.

Thank you so much

Sam

[davianne]

Hi Sam, I have F4 cirrhosis, and when diagnosed 4 years ago, my liver was decompensated, but with, in my case, stopping all alcohol, eating a healthy diet and exercise, my liver is now compensated as Katie said. I do still get the symptoms of cirrhosis, but my cirrhosis has stabilised.

So, your Mum can come back from the brink, as I have done, and I hope and pray that is the case for her.🙏🙏🙏

Stay Safe,

David

[Centralperk in reply to davianne]

Hi David,

Hope you are well.

My son has recently being diagnosed with AIH & CIRRHOSIS, he is 16yrs old.

Can I ask which is the best diet for this condition please, as we are still new to dealing with this. & waiting to hear from the dietitian.

Thanxs

Naz.

[davianne in reply to Centralperk]

Hi Naz, with regard to diet, it is basically quite simple. A good balanced diet with plenty of fresh fruit and Veg, and keeping away from junk food, as they contain loads of salt and sugar, which are harder for a damaged liver to process. I cook most of my food from scratch, so I know what goes into it. Keeping away from salt and sugar can be hard, as a lot of foods you wouldn't think have these, actually do. My food tastes are very varied, so I cook my healthy versions of Italian, Indian, Thai, Mexican as well as Spanish and French, so it needn't be boring 😊.

Here is a link to the BLT publications which covers AIH and Diet Info for cirrhosis sufferers:-

britishlivertrust.org.uk/in...

I hope this helps,

Stay Safe,

David.

[Centralperk in reply to davianne]

Thanxs David,

I really appreciate all the advice given. I also cook a lot of things from scratch. He has lots of fresh fruit & veg.

Take care & stay safe

Naz.

[Lam1e in reply to Centralperk]

Hi Naz if your son has lost a lot of weight he will probably be recommended a high protein diet! I was recommended dairy all full fat and also had 3 fortisip drinks a day (about 300 calories each)! Also to try and exercise and try and build muscle! Everyone’s needs are different and the dieticians are really helpful!

[Centralperk in reply to Lam1e]

Hi Lam1e,

My son's been on a really high dose of Pred, since September 19, 40mg daily, which has slowly being reduced, so he's put on quite a bit of weight. He's also on Azathoprin 100mg, daily but his WBC fell down to 2, so it's been reduced to 50mg.

It's such a worry, with him being so young, he's been shielded for 6 weeks now, but the consultant wants him to go for a Liver Scan next month, which I am concerned about. I obviously don't want to put him at any risk, he means the world to me.

Any advice would be much appreciated.

Thanxs

Naz.

[Sam0101 in reply to davianne]

Hi David

Thank you so much.

Before I never knew that liver cirrhosis can reverse. It's so reassuring to know this.

I will make sure I stick to the healthy eating and improve where I can.

Thank you so much and best of luck

[davianne in reply to Sam0101]

Hi Sam,

The damage to the liver, ie the nodules cannot be reversed, but the liver with help from the spleen, can perform it's functions, but just not as well as healthy liver. Fatty liver on the other hand, ca be reversed. With cirrhosis, it all depends on how much of the liver is damaged. In my reply to Naz, I said the key is a healthy diet, with no alcohol, salt or sugar, and plenty of fruit and veg, avoiding processed food ie, ready meals.

I hope this helps.

Take Care,

David

[davianne in reply to davianne]

Hi again Sam, I forgot to add that going from decompensated to compensated, is not a cure, it just means that the cirrhosis is under control, and, if it remains so, it will not result in liver failure.

David

[Sam0101 in reply to davianne]

Hi David

Thank you for that information.

I understand now.

I cook mums food from scratch...I reduced her sugar and salt...fresh fruit and veg and we dont do ready made meals what so ever in my house.

It's just me and mum and since I've been caring for mum its fresh food regular walks and just keeping her healthy clean well and happy.

I understand what your saying now about it's not a cure it's a management.

I'm hoping to get all her tests done again to see where we are with her liver cirrhosis.

Thank u David for all the info.

Best wishes

[davianne in reply to Sam0101]

Hi Sam, It sounds like you are doing all the right things to not stress your Mum's liver....well done❗❗👍👍

David