Cirrhosis’ of the Liver

[Colgoldlyn77]

On Friday my wife and I got so awful news that she has cirrhosis of her liver. it’s described as fatty, and scared the consultant said it is partially reversible. My wife is overweight with a BMI of 41.9🙁 We are going to Slimmers world every week. Any help and advice would really help.

[AyrshireK]

The British Liver Trust has excellent pages detailing Non Alcohol Related Fatty Liver Disease (NAFLD) and how it can be reversed, a Mediterranean Diet is also proven as useful in treating the condition.

Obviously she is taking steps to reduce her BMI so that will all go a long way to helping her condition. Even early cirrhosis is now thought to be somewhat reversible so it's important to make the serious lifestyle changes to help that come about.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

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Exercise is super important too so any type of exercise she can manage will also help.

Cirrhosis isn't a death sentence providing you do something about what has caused it, if the cause is shut down then further damage may be averted or even possibly reduced.

My hubby has had a cirrhosis diagnosis for 10 years this year (presenting with decompensated symptoms in April 2012) today he is stable (ok not 100% well and has some symptoms) but he has regained his MOJO and since September has fallen in love with cycling - he's just heading out the door to go biking (14 miler on the cards).

Katie

[Colgoldlyn77 in reply to AyrshireK]

Hi Katie, what you have said is reassuring, at the moment we just feel numb, the specialist in Halifax is retiring this year, we feel quite helpless, no point of conduct.Lynne has rheumatoid Arthritis from the age of 30 so exercising is difficult due to pain.

I feel quite cross the this hasn’t been picked up earlier, she has had regular 3 months blood tests for liver functions, also ultra sound tests, MRI scans, and the last one was biopsy.

Lynne has joined a liver trial test, her liver will be scanned every 6 months.

I know we have to concentrate on the positives, but I do feel Lynne has been let down on the clinical side of things. The future treatment involves a tube to be inserted down into the stomach lining to look for enlarge nodules, and if there is any can tie them off to stop bursting or bleeding, it sounds horrendous. I can’t help feeling like I do we feel helpless 🙁

[Cornflower9 in reply to Colgoldlyn77]

I can fully understand how you both feel at the moment.I too was overwhelmed when I got my diagnosis last year.

I speak to my liver specialist nurse every six month & also have ultrasounds & blood tests

every six months also.

I do walking exercises which do help my mood start slow don't go mad & put yourself off.

Keep your chin up.

🚶‍♀️

[Colgoldlyn77 in reply to Cornflower9]

Thank you it means a lot, at the moment it’s early days but we do feel helpless and numb with the news x

[Doechloe in reply to Colgoldlyn77]

it is a lot to take in, try and stay positive . have you got a consultant you can speak to. if you get anxious it will make you feel so much worse. i was low with it all , with lots of support get though it.x

[AyrshireK in reply to Colgoldlyn77]

It was bleeds in the oesophagus that lead to my husband being diagnosed with cirrhosis, he has had regular endoscopies - for the first two years it was every 5-8 weeks and he had 42 varices banded. He goes for a scope annually now and a 6 monthly scan is par for the course with cirrhosis (The scope isn't pleasant but if she goes for sedation and the throat spray it should be more tolerable). Hubbies condition is due to Auto Immune Hepatitis.

If you feel you arn't getting enough support at Halifax could you potentially request a referral to St. James', Leeds at it is a specialist liver centre.

Unfortunately too many people arrive at a diagnosis of liver disease when it is already pretty far advanced. The BLT currently have a campaign running called 'Sound the Alarm' and it is all about campaigning for earlier interventions. britishlivertrust.org.uk/so...

[Hidden]

Good morning. Welcome to the forum, I am sure you will receive good support from fellow forum users. I see Katie has already given you some links.We have a lot of information on our website which may be helpful so I will give you some other links below. I have included one called the patient charter - what you should expect from your care.We also have a free telephone helpline - you might like to speak to one of our liver specialist nurses. It is open Mon-Fri from 10:00 - 15:00 0800 652 7330

britishlivertrust.org.uk/wp...

britishlivertrust.org.uk/wp...

britishlivertrust.org.uk/wp...

There are also NICE (National Institute for health Care and Clinical Excellence) guidelines on the management of fatty liver disease. Your wifes doctor will be aware of them.

I am assuming she is under the care of a liver team ?

regards

[Oscar21]

Firstly try not to panic. It's a massive shock to you, but it's not all doom and gloom. I was diagnosed nearly 10 years ago. Mine was caused though alcohol. I have not touched a drop since and am living a relatively 'normal' life. I do suffer with fatigue etc, but I'm alive and kicking. My advice would be to listen to your Hepatologist and follow their advice. Also try not to google as it will frighten you. This site is excellent and Members give very good advice. Also the Helpline nurses are wonderful and sometimes its great to actually be able to speak to someone knowledgeable. Also use the Search button in the top right corner. Take care and I wish you well

[Doechloe]

hi you sound just the same as me, was told 20/20 i had liver cirrhosis with portal hypertension, i am 74, my bmi was 40. only just getting my head round it all. on a really.wishing you the best health eating plan now and doing a lot of walking, my is compensated so my liver is still working, so i need like you to take control of my life. but was told it is not reversal,

[kensimmons]

Keep going to slimmers and don't drink and she might see great improvement. Take any medication the doctor tells you to. Please do not panic. If she is still able to be up and about and exercising those are all very good signs. Keep it up and keep a positive outlook!

[Turvy]

Hello, I too have cirrhosis (1 point below UKELD score for a transplant) due to alcohol. I knew I had a problem and even paid an extortionate amount for an unsuccessful stint in residential re-hab a few years back. When I was finally diagnosed I too was in total shock. I haven’t had a drop since. Your words ring bells in my head - HOW- was I not diagnosed earlier? I had had blood tests and ultrasound scan too, just to be told I had a bit of a fatty liver & that it would mend itself! I know it’s my fault, but I wish now that I’d had the knowledge of the potential damage. However, life is so good without alcohol now and mentally I am healthier than ever. I have another health condition hindering me, but my liver seems to be working surprisingly well. My diet is restricted (no salt/fried or refined foods and only occasional red meat). My weight is good, fitness returning, nails the best they have ever been, skin not bad for my age (58) and my hair is thicker again. I’m a different person to the one I was 15 months ago - and am more fun and generally a better person (I think). Honestly- the shock was awful and the information overwhelming and daunting, but life seems to be just getting better. I really wish you all the best for your way forward and please stay positive . I find this forum very informative and am so glad I found it. It is so good to know we are not alone. Best wishes.

[Steak]

Sorry to here that I had cirrhosis and had to have a transplant. They put it down as non acholic fatty liver disease. Good luck and take care. X

[pushthrough]

Sorry to hear about the news. I’m 39 with compensated cirrhosis they say is due to alcohol. It scared the heck out of me. I first presented with symptoms march of last year, quit drinking and changed my diet. December 2021 I received my official diagnoses. It tore me up after hearing it but after hearing that those with cirrhosis due to alcohol often find out when they are severely decompensated I’m thankful. I thought people were just trying to make me feel better when they said you can live a very long time with it. However I feel completely fine and believe I have many years ahead of me. Limiting salt is by far the hardest things but extremely helpful. I stay right at 2000 mg a day. You may need to eat less salt than that. Like many others I had blood work etc and it was fine until one day it wasn’t and the damage was done.

[deanw41 in reply to pushthrough]

How do you measure your salt? Count the granules?

[pushthrough in reply to deanw41]

Lol. Hope the labeling is right on all the food and liquid. Which in the US it’s very likely not. Good one Dean. 😂