Scared

[Kikidee08]

I’ve been feeling a bit rubbish very tired ,had some tests showing elevated ALT ranging between 47 and 76 this year also raised ferritin around 300 .

Diagnosed by this and a fibroscan showed f4 fibrosis /early Cirrosis and fatty liver disease .

Awaiting full bloods but I know 30 years ago they saw I had fatty liver disease but they weren’t interested .

I didn’t drink much don’t smoke ,I have a dependant 13 year old with autism ,2 grown up daughters and 3 little grandchildren .

I’m very very scared ,read up on this says I have 12 years max online .

I have a few questions ,do most people get a liver transplant in time ?

Can I keep my numbers to first 12 %and live reasonably ok with eating healthy and avoiding alcohol forever !

I’m a bit lost and sad with very negative thoughts .

Please help me come to terms with this diagnose .

I’m 52

[jbrking]

Hi sorry to hear you’re feeling like this. I was diagnosed with nafld when I was 38. My Alt was around 200. I was put on a statin, fenofibrate and BP meds, and my ALT settled around 75 for years. Ultrasounds and fibroscans just showed fatty liver. I tried to lose weight but it is very difficult. I’m 54, a size 16-18. This year my ALT went over 100-120 again and my bloods were indicating advanced fibrosis and in October I had another fibroscan cap 334 and kpa 12.7 so I’m at a similar stage to you. Consultant was happy with all the meds I’m on and said to try and lose weight. A timeline wasn’t given and there’s no reason why you can’t live with fibrosis a very long time. I don’t drink at all, but my fatty liver isn’t caused by that, it’s mostly down to food. I don’t eat fatty things, but due to a bowel condition, carbs like bread I can tolerate and I have joint issues so exercise isn’t easy, so I’ve developed type 2 diabetes also. I’ve recently started using an app to track calories and am losing about a 1lb a week. I’m probably a stone less than at my heaviest over the years. My consultant said she doesn’t care what I eat and if I find that works for me then great. I’ve had diet pills before but they were awful cos I the time I had an undiagnosed bowel condition. So there is hope, no reason for it to progress anymore if we eat healthy and keep the weight down and exercise. I’m going to try and do little walks even if just for 10 mins. Or march on the spot.

[Readlots]

Hi Kiki, banish those negative thoughts. Read the replies to Buster because he was raising the same concern about lifespan - you’re no alone! My Mum and I both had/ have liver disease ( in our case autoimmune and genetic). My Mum was diagnosed in the early days before the internet and was told by her consultant that she had 2 years. She lived 20 and died at 75. She looked after her own Mum who only died 18 months before her and she saw her grandchildren grow up into their 20s. She ate healthily and walked every day.

It’s normal to feel rubbish after a diagnosis. Google isn’t helping that. Ask for a referral to a dietician if you feel that you need some support. Be kind to yourself and enjoy your beautiful family.

Happy Christmas and a positive new year!

[pushthrough]

Hello. Sorry to hear you are scared. I was petrified when I was told nearly 2 years ago. Not good when someone with existing anxiety is given that diagnosis. Every 6 months I get a check up the worry seeps in. This forum has been instrumental for me

The short answer is ignore Google because they give worse case. I have arld Meld 9 as of days ago. If fluctuates and it could be at a 8 tomorrow. Make sure you see a hepatologist and dietician. The best thing you can do is get rid of whatever caused it, sounds like in your case fatty liver. It sucks not going to lie. But there are a lot of people on here and have family that have lived a very long time with it. If I recall some people are alive close to 30 years in. The liver is an amazing organ.

Stay off Google it will make your anxiety worse. I know from experience. If I have questions I come here and ask because people on here either are living with the disease or have loved ones with it.

Take care,

G.

[buckldgl]

I've had a transplant. Problem was liver cancer. Didn't drink a lot or smoke but did have type 2 diabetes and overweight. Plus high blood pressure and cholesterol. I became very ill and had huge weight loss. Also had my gall bladder and appendix removed. My chances were low.

Following my transplant I developed cholangitis so being kept alive on antibiotics pending second transplant. Been on list for over 2 years. So I have health issues!

I'm 66. I keep very fit and carefully watch what I eat. No sugar or carbs.

Sugar low and cholesterol below 3. Blood pressure good. Most days feel great and getting on with life.

Inspired by a friend who was diagnosed with terminal cancer and lived 17 years.

Special thanks to King's hospital

[YummyBear]

Be positive by reading the accounts of the above posters. I share your concerns, I too was the same, it is always there in your mind but eat healthily and exercise will help improve the liver. I too have read online about life expectation; you can improve your liver by being respectful to it; every piece of food goes through it, so check on the British Liver Trust for best dietary foods to keep the liver in tip top health. One of the things I was aggrieved with at the time of diagnosis was that 15 years prior to this shock, was that scans showed I had fatty liver disease. My GP hadn't heard of it, and said he'd look into it! Nothing was ever said about it, that is until 7+half years ago. It was a little known condition years ago but a huge issue when out of the blue Cirrhosis had developed!