Substantial Cirrhosis

[Frankby]

Hi, I've been diagnosed with NAFLD and I have substantial cirrhosis of the Liver, Consultant didn't give me a cause.

I'm a 46year old retired RAF, I gave up drinking 20+years ago, have had a BMI of 28-32% for most of adult life, was very fit and I only eat fresh food.

I am still active but have a couple of war wounds with associated conditions that have slowed me down as I grow older.

I am struggling to accept the devastating diagnoses. The Dr. said " substantial Cirrhosis affecting most of your Liver, we will scan you to check for tumors and test blood every 6 months, but we can't do anything to cure you."

Is there anything I can do beside waiting for Liver to fail. I would like to prolong my time on this mortal coil.

[jojokarak]

Hi frank sorry you have joined the club. Have you been diagnosed by your local hospital? I only ask because if you had substantial cirrhosis I don't understand why he wouldn't of referred you to one of the specialist hospital's. Have you any symptoms? Why did you go doctors in first place, sorry to bombard you with questions but if your blood's and liver are functioning at a manageable level that will explain a few things, as your only 46 don't give up hope someone will find out why you have developed cirrhosis and if it becomes any worse they won't give up on you, they just tend to let you get on with life until a transplant is the final solution. I know it feels devastating at the minute, but as long as you eat healthy (no salt) all fresh food and keep active you can hold off the inevitable for now x

[Frankby in reply to jojokarak]

hi, I have been looked after at Maelor wrecsam, I don't know much about livers, unfortunately I have CPS (chronic pain syndrome ) and NRID (inflammation in all joints) and my drug treatment has masked the symptoms sadly preventing earlier diagnosis.

I will speak to my Dr. on Monday and contact consultant, clinic on Tues., to ask for help/info.

Thanks ☺

[Hdon]

Cirrhosis at your age, in a non drinker, could quite possibly be Haemochromatosis, a genetic condition resulting in excess iron stores in the body which then causes cirrhosis and other organ problems. If not already done, you need to get your iron levels checked via a simple blood test to check your ferritin and transferrin saturation levels. Check out The Haemochromatosis Society website.

[zogman in reply to Hdon]

Quite So get it checked for iron overload.

[Latchford]

I'm exactly the same. However they've now found tumours on the liver so, providing they've not spread, I should go on transplant list tomorrow. I'm not sure what you can do except follow a healthy diet and carry on what you've been doing. If it's not already happening I would ask to be referred to one of the specialist centres because it sounds like you may be considered for transplant. Good luck.

[AyrshireK]

Hi Frankby, I am just wondering how they came about your diagnosis of Non-Alcohol Related Fatty Liver Disease. With your diet and lifestyle it's unusual (though not impossible).

Did they investigate other possible non-alcohol related issues and have you had a liver biopsy?

My hubby was 8 1/2 stone soaking wet, a tee-total, extremely fit and active long distance walker who racked up many, many thousands of miles a year.

At about 48 years old he started to experience fatigue which was never looked into and then in 2012 he suddenly presented with late stage cirrhosis symptoms (burst varices). On hospitalisation he was found to have cirrhosis - via biopsy, ultrasound scan and symptoms.

Doctor ruled out fatty liver although he did say that "even someone built like a racing snake could have it" and the diagnosis in the end was Auto-Immune Hepatitis. On further investigation at the liver transplant unit we were told he has burned out AIH - his AIH is no longer active but has left him with advanced cirrhosis.

Now 5 years down the line and his liver is stable. He is far from healthy and has various issues with fatigue, hormonal issues and confusion & memory issues due to minor hepatic encephalopathy but his blood tests are normal and his liver is coping.

They need to confirm 100% that you have NAFLD as there doesn't seem to be much you can amend in your lifestyle to combat that, however, if it was one of the other non-alcohol related causes there might be treatments available to slow down or even reverse damage. Transplant is probably a long way off but you do need to be seeing a hepatologist or a gastro with a qualified liver specialism. 6 monthly scans and 6 monthly bloods is about right providing they have for definite diagnosed your cause to be NAFLD.

Wishing you all the very best, Katie

[Grankids3]

Hi, I also have regenerative nodules on my chirrotic liver, also lesions, I did not drink but was told my Diabeties is the probable cause, I get 6 monthly MRI and had a liver Tipps, it's a stent put in the liver for portal hypertention, this has all happened over a 10 year period, I am as they say stable, but exhausted, pain, struggle some days, but it was through the scans they found my Bowel cancer 4years ago, I am now cancer free, I get well monitored and looked after at hospital, a good gastro, surgeon who is a liver specialist, im 66 this year and just retired, I've many ailments but appreciate each day I wake up, continue to get on with life, let the docs help you, the people on this forum are good to talk to, wish you well, xx

[MalcolmCClark]

Hi

I served in the RAF myself in the 80's. Drinking did feature strongly in our socialising, However for the last 5 or more years of my RAF career I did lighten up on the alchahol intake and now in civvy street was practically teetotal. I have put on some weight and was told about 20 years ago that I had a fatty liver but no follow up was ever sugested. Last year I went for major surgery and during that surgery they found I had NAFLD and was confirmed by biopsie taken at the time. The cause is due to the fatty deposits on the liver. I am now under the liver team at Kings College London who have put me on 6 monthly ultra scan checks for life. This is to keep an eye out for cancerous tumours in the liver.

NAFLD is now becomming a big problem in the UK and cases are rising.

This condition is often found by accident. Fortunately mine was found before varices developed so the main change that I have had to undergo is avoid all booze.

I am going to have to live with this condition for the rest of my life. The surgery I was supposed to have was a stomach bypass or bariatric surgery. The surgery is still hopefully going to go ahead but it is subject to my liver remaining clear from tumours. Losing weight will help the cirrhosis and my type two diabetes. My blood tests over recent years have been slightly high but not high enough to cause concern. I have also been experiencing a lot of pain and discomfort up under the ribs on my right side. I would urge any person who has the same synptoms to push for checks on their liver. I believe that the high blood results was put down to my fatty liver. No one ever told me that I was at high risk of forming cirrhosis. I think there is a change in thinking over the fatty liver diagnosis in that doctors are starting to realise that it is possibly linked to the rise in cases of NAFLD.

Memory and confusion is also a symptom so please get your self checked if anyof my story sounds familier to you.

I hope that anyone who has NAFLD gets the care and treatment they need to continue living as normal a life as possible.

[Frankby]

Hi All, thanks for the replies.

I was suffering with my water works, had scan of prostrate and bladder, result was a slightly reduced prostrate and an enlarged bladder (holds about a litre). blood test was taken and appt. with Liver consultant(cons) arrived in post.

Cons. talked to me about the blood test giving a fairly accurate yes or no to Liver disease, I was a maybe so Cons. sent me for a Sonar scan and said I may need a biopsy.

They then forgot about me for 11 months. I went to GP to see if they could chase up my appt. I ended up chasing up my case. I am worried it has worsened over last 11mths.

I have not had a current Scan if they book one for 6month from now I would have 18 month gap, also don't know current figures on cirrhosis level.

I don't know a right lot about Cirrhosis but the Technician who performed scan told me it was bad.

I obviously need get in touch with Cons. for more information, what do you suggest I ask?

F.

[jojokarak in reply to Frankby]

First it's up to consultant to inform you of how advanced it is... A technician is not allowed to give you any information especially if it's your first scan. Have you got any symptoms? you should go see your gp and ask them to write to your consultant and explain how long it took to get your original scan and the diagnosis and see if they can get it brought forward. Has your consultant even told you that it's severe?

[matt137]

Hi Franky. I know its devastating when you are told. I still suffer with anxiety about it at times, but I use this site to help me through that. Im 44 with 'significant cirrhosis' aswell. Mine is due to alcohol. Never really considered myself a drunk though, just a heavy social drinker, but thats been enough to cause the damage.

I dont take any medication at the moment, only prescribed vitamins. I also just have an ultrasound scan every year with bloods taken every 6 months.

Theres a number of members here that have had the diagnosis for 10 or more years, without transplant. I know everyones liver works differently, but being as healthy as you can is all you can do. And of course try and remain positive and happy. I find it does me the world of good.

Keep your chin up, the news gets easier to accept with time.

Matt