Cirrhosis lifespan

[Tim12]

I talked to my Liver consultant yesterday she said how long is a piece of string I was diagnosed 2 months ago with a KPA of 28.1 Fibro scan of which I am getting a second opinion as it seems rather high and ultra sound only showed smooth fatty liver

[AyrshireK]

No doctor can estimate how long you will live with cirrhosis - it really is dependent on how well you keep yourself, staying off the booze obviously, eating healthily and appropriately for your condition, keeping fit and well, avoiding bugs and infections as much as possible.

My hubby was diagnosed with decompensated cirrhosis in April 2012 having nearly died from a massive variceal bleed, he was assessed and listed for transplant in 2014 but stabilized sufficiently to come off the list 10 months later. 7 years further down the line he remains stable (not 100% symptom free or 100% well) and lives life to the best he can. Eats according to his dietician's advice, exercises by walking and/or cycling most days, is fully compliant with all his doctors instructions and takes all his medications properly.

His consultant is delighted with him and hopefully we can stave off the need for tranplant but that will depend on avoiding doing anything or catching anything that might tip his liver back to decompensated status - alcohol played no role in his condition and a lot will depend on his immune system not playing up again.

Hubbies consultant has patients on his books who have had a cirrhosis diagnosis for over 20 years who are no where needing transplant nor at deaths door.

Katie

[Tim12 in reply to AyrshireK]

Thanks Katie for the info

[Readlots in reply to Tim12]

My Mum lived for 20 years with liver disease and died at 75. Like Katie’s husband she never touched alcohol, ate healthily and walked every day. She was monitored by the hepatology team and took her tablets religiously. Even at the end doctors couldn’t say how long she’d got “livers are notoriously unpredictable”.

[WilkesG in reply to AyrshireK]

That's great what your husband has been able to do. What is his diet like and what meds does he take?

[AyrshireK in reply to WilkesG]

Hubby eats pretty normally, roughly still following high protein, high carb, low salt diet.He likes plain grub. Yesterday he had a cup of coffee and biccie in bed to start the day. Porridge with milk and sugar, a banana and cup of tea for breakfast. Mid morning cup of tea (no snack but sometimes does), lunch 2 boiled eggs, slice of bread with marg. and biscuit. Afternoon coffee and biscuit (or flapjack). For tea it was pork chops, boiied potatoes, 2 veg and low salt gravy, slice of cake, cup of tea. He has flapjack beside his bed for overnight nibbles.

Meds:- Prednisolone (maintenance dose 5mg to deal with any silent liver inflammation - his diagnosis is auto immune cirrhosis), Omeprazole, Adcal D3, Lactulose & Rifaximin for Hepatoc Encephalopathy and daily Phenoxymethyl Penicillin to support non-viable spleen.

He has cycled in excess of 1500 miles this year and generally keeps himself as well as possible. A lot of living with liver disease is about positive mental attitude and not letting it totally dominate your life. My hubby has never come on here, he gets on with living his life and i've done all the research and learning in order to support him the best I can.

Katie

[55spenc]

Hi Tim, can you have a look at what ive just posted please and advise?

[Kristian]

As Katie says, you cant really give a life expectancy as there are so many factors that affect the outcome. Many people live long lives even with liver disease and even cirrhosis. You just need to manage whatever it is that's doing the damage.

However, if anyone asks you, "How long is a piece of string?" The correct answer is, "twice half its length" 😉.

[Roy1955]

Chances are of a normal lifespan if you treat your liver with respect.

[Iro1]

my mum died with cirhossis but not of it at 94. I think she had haemo which was diagnosed I have one copy of the gene.

[Aotea2012]

I’d live your life rather than worrying about when you are going to die. There is one certainty in life....we will die! I have cirrhosis, diagnosed in March 21. I probably feel better at the moment than I have in years. I was in hospital very ill with a deep rooted infection when I was diagnosed. I’ve followed all the medical advise. I eat healthily, exercise and most importantly of all haven’t drunk anything since my diagnosis. I’m very well and now live life to the full. I’ve fortunately been given a second chance and have grasped it with both hands. Be sensible but don’t constrain yourself or worry about tomorrow if you feel really well today. Chances are you’ll die with liver disease rather than die of it.

[1of5]

I don't like specialists giving answer like that. You are anxious and flippant answers help no one. Next time tell to measure the string with the information at there disposal. Having said that it is difficult to give a life expiation. In normal life we should live into our 70's. Some longer, some shorter and in part depends your lifestyle.

My Consultant said if I look after myself I should have a normal life expectancy. He went while he can't be certain if i went to my old lifestyle. I would be lucky to live three years. This gave me hope and 14 years later, here I am in good health although I do notice a difference if I don't exercise or eat rubbish food.

I am getting older now and sure am going to die of something but it may not be my liver. For most patients they have a big role in keeping healthy and you can get some liver recovery. Next time you see your consultant what can you do to improve your chances of a clearer prognosis.

If any of were going for an operation and we asked what are the chances of surviving the operation and the response was how long is piece string. I for one would ask for more information, risk factors, his/her experience in a given operation. If they were unable to explain the main risks. I would not let them treat me,

I have treated rather well but when I ask a question I want an answer and I will not move until I get the answer. How long is a piece of string= how much do you as a specialist really have?

You may get a lot of depends on the extent of the damage to your liver and the symptoms you are experiencing and what you are doing to improve your life style. There are tools that are used to estimate someone's life expectancy.

Anyway that's my very long winded answer.

ps wish me luck at my six monthly check this Thursday.

[WilkesG in reply to 1of5]

Good luck! But it sounds like you are doing everything right! I need to get back to my exercise.