Please HELP - just diagnosed with NASH cirrhosis

[Catz1]

Is there anyone who has cirrhosis and has started to heal or reverse some of the damage? I really need to hear something positive if there is anything.

I am feeling really anxious and like I have been given a death sentence and left to deal with it myself.

In February I had my gall bladder removed as was getting pain in my right side. They said I had a 2.2cm stone but I was not convinced this was the cause of my pain as my mother & husband had had really bad bouts of excruciating pain when their gall bladders had problems but mine was more like a dull ache that was constantly there and sometimes worse when taking a deep breath. After an op to remove the gall bladder I ended up in ICU as I had a bleed from a severed artery. When the consultant finally came to see me a couple of days later he told me my liver looked very bad so he took a biopsy. He really scared me by his tone and I asked if it was cancer and he said no. I was then called a couple of weeks later with the results and he told me over the phone that I had NASH cirrhosis, that I needed to see a liver specialist and to look it up on the internet. I later received a letter with this diagnosis which was sent to my GP. I finally got a letter from the NHS to see someone in July but after researching my diagnosis online I have been in a state of complete shock and frightened beyond belief. I am trying to stay positive but am finding this difficult so much so that I have now gone to a private liver specialist who because of the Corona Virus pandemic is going to do a consultation with me on the telephone. I am so confused as blood tests have never shown anything abnormal and in January my liver function was good. I dont think I have any symptoms, am on no medication, do not know if my eyes are yellow (hubby says not!) but I know this has been caused because I am overweight and have been for a while. He also told me that losing weight quickly last year and then putting a lot of it back on again could have made this worse. The diets to follow online are so conflicting I just dont know what to do? Sorry about this long post.

If anyone has any ideas what I should ask my liver specialist please can you let me know asap? Many thanks to you all and for all your posts with so much information and help with all your posts.

[AyrshireK]

Welcome to the forum Catz, sorry to hear of your diagnosis but glad you have found your way on here where you will meet lots of supportive folks.

Did you find your way to the British Liver Trust main website ? They have an excellent and very thorough page about Non Alcohol Related Fatty Liver Disease and NASH. britishlivertrust.org.uk/in...

The good news might be that if your bloods are normal you might not have ongoing hepatitis i.e. NASH.

Ok, you've got cirrhosis which if you can make any positive lifestyle changes you might pause further damage and even possibly reverse some of it to a degree.

As regards questions to ask your specialist the BLT has a page all about what you should expect from your care and suggestions for questions to ask to make the most of your consultations.

britishlivertrust.org.uk/li...

britishlivertrust.org.uk/li...

All the best,

Katie

[Catz1 in reply to AyrshireK]

Dear Ayrshirek

Thank you so much for your speedy and informative reply. I have been trying to be positive but am really scared by all this new information and so much conflicting advice on the internet. Its just useful to hear from others who understand because they have been through it. Sometimes we just need to hear something true but positive. I need to have some hope.

Thank you for your links will take a proper look tomorrow morning (as am NASH cirrhosised out) although I think I have been on that site already I will make sure I havent missed anything.

I will keep positive, have already drastically changed my diet and am going for 20 minute walks twice a day. Will also pray. What more can I do?

Kind regards

Catz1

[Iceman7575]

Hi

Do you know what your ALT level was?

[Catz1 in reply to Iceman7575]

Dear Iceman7575

Thank you for your reply but NO I dont know anything about ALT levels just got a phone call followed by a letter.

This is what he wrote in the letter

'Diagnosis:

Gall stones

Right upper quadrant pain

Laparoscopic cholecystectomy

Thick walled inflamed gallbladder

Probable liver cirrhosis '

& then further down in the letter he wrote that

'...the gallbladder was inflamed but the important finding at surgery was of a liver which appeared to be cirrhotic. I took a biopsy of the liver as well as removing the gallbladder. The gallbladder histology has shown chronic choleystitis as we would have anticipated but the liver biopsy showed NASH cirrhosis. The background liver has severe stetosis and steatohepatitis.'

That is all I know he also says he discussed it with me but all he told me was that I needed to see a specialist as he was a surgeon and couldnt answer my questions. Now I am going to have a telephone consultation because of the Corona Virus and really dont know what to ask.

Kind regards

Catz1

[Owlie]

Dear Catz, well he was really helpful telling you to look up it up on the Internet wasn’t he?! The last thing you should do is Google it, I did this and scared myself stupid so I totally understand where you are coming from. Okay, I’m not a Doctor so can’t help you with the diagnosis or anything etc, but I can tell you about me which may help. Just over 18 months ago a routine blood test picked up a problem with my liver, I had an ultrasound and was referred to a hepatologist. I went home completely in shock as I don’t drink alcohol and, apologies, thought that was what caused liver issues. How wrong was I! I couldn’t afford to go private and had to wait months and having Googled it decided I was at deaths door and completely freaked out at stupid o clock in the morning. I had found this site and just wrote everything down and lo and behold someone else was on here at stupid o clock who was very reassuring and calmed me down and talked me through stuff. So, I have a fatty liver due to being overweight and eating complete rubbish and not looking after myself, I have always been super slim but I lost my mum and just stopped taking care of myself. Anyway, I decided to try and help myself, I researched and started eating healthily. I didn’t eat anything processed, no red meat or fizzy drinks etc. I only ate porridge and fish or chicken and turkey and lots of veg, I only drank water. I couldn’t do much exercise at first but I didn’t give up. By the time I saw the consultant I had lost 2.5 stone and my blood tests had improved dramatically. He said I had done really well and my liver damage was reversible but it could take 2 years. My advice is to think positive, do that exercise every day, stick to your healthy eating and don’t beat yourself up if you slip up, just keep persevering oh and watch your portion size! If you start being healthy then hopefully things won’t get worse and you have everything to gain. Sorry for the ramble and I hope this helps, Owlie xx

[Catz1 in reply to Owlie]

Dear Owlie

Thank you for responding so quickly. I just want to hear something positive as like you I have been feeling like Im at death's door without all the facts. Thank you for telling me your story and Im so glad yours is reversible and Im absolutely sure with your attitude you WILL DO IT!

I have started my new extra healthy (well I think! 🤔 ) regime and just have to wait and see how bad my liver damage actually is. I know it is bad but as I am not too symptomatic hopefully I have enough good cells left to do something about this.

Thanks again and wishing you lots of luck on your liver strengthening journey.

Keep safe

Catz1

[Owlie in reply to Catz1]

Seriously you it is amazing what livers can do, try not to think about damage etc and just focus on small steps and being positive. It doesn’t happen overnight but things will start to improve. Good luck and feel free to pm me if necessary x

[Catz1 in reply to Owlie]

Thank you that means a lot. I have had years of self neglect as have been looking after a husband with cancer who has now recovered well - thank goodness as only a 5% survival rate - so I do believe in miracles and am going to do all I can for me now.

Thanks again so kind of you, AyrshireK and Iceman7575 to take the time to respond to my post. I really appreciate any help from people who understand and in the same position.

Catz1

[utep99]

Get on Lactulose and rifraxin (these prevent brain fog) Also see if you need water pills. You cannot undo this it is done. Get medications that will help your liver stay as healthy as long as you can. I have had it since 2015. Even today my MELD is 10 which is about 4 points higher than normal. CHANGE YOUR DIET!!!! No fast food, No white bread go for a whole wheat seeded bread. Eat a lot of veggies and chicken. Steak rarely like about once a month. Follow as closely as possible a Mediterranean diet. Your liver does not need to be overworked always trying to process beef or junk food. Exercise walk, walk, walk and walk or bike but do something. Ask about getting on a transplant list as soon as possible. This way you can get a transplant when that step is needed. This is why weight loss and sugar levels need to get under control.

[one2one]

Catz time to take a deep breath, the feeling and thoughts 💭 you have at the moment are normal.

I’m in the same boat 🚤 with you, having been diagnosed with cirrhosis in September 2019.

It’s not going to be easy, but you’re not in a situation where you can’t improve the issues dramatically.

I’m not going to overload you with all do’s & don’t right now, it will take a while to digest. But please 🙏 try to keep calm . We’re all here for you regardless ready, willing & able to help anyway we can.

At 72yrs of age if I can do it so can YOU (yes). Quite happy 😃 to chat personally if you need. Just let me know. In the mean time concentrate on one day at a time, start with your diet healthy things that you can eat and enjoy, paying particular attention to fat and salt content needs to be low keep yourself hydrated, exercise and I don’t mean marathons 😂haha.

Take care. Chrissie 👌.

[Catz1]

Dear Chrissie

Thank you very much for your response to my post. So sweet of everyone to reply to help me.

Catz1