What is the difference between compensated and decompensated cirrhosis?

[Pensylvania]

[Hidden]

Here's a link to a good description of the differences mysickliver.weebly.com/comp...

[Pensylvania in reply to Hidden]

Many thanks dmanflan, I will check that out.

[Bolly]

With compensated cirrhosis you may have no symptoms at all suggesting anything is wrong, or a few of 1) feeling tired, 2) loss of appetite or feeling sick, 3) tenderness around the liver.

With decompensated, when your liver is no longer coping with its functions, you will have more obvious symptoms and side effects such as jaundice, ascites, itchy skin, oedema, varices, portal hypertension, change in bowel movements, sleep disturbance, confusion or forgetfullness, dark urine, tremor, intolerance of alcohol, problems with medications.

[Pensylvania in reply to Bolly]

Thanks Bolly, I have Cirrhosis but nobody mentioned that term before. I had ascites, and oedema, have portal hypertension, (had an endoscopy), and yes, forgetfulness. Stopped drinking September 2011 though, and I feel fine, most of the time, though I do rely on sleeping tablets sometimes to get a decent nights sleep. I'm just see-ing my consultant on a 6 monthly basis, and havn't seen a nutritionist but know that I've to avoid salt, white bread, spicy things, and chicken skin, raw fish, shellfish... So, am I somewhere in between then?... Very kind of you to take the time to reply.

[Bolly]

Sounds like you have 'decompensated' then if you have portal hypertension and have had spells of ascites and oedema. From what I've been told, once the liver has become 'decompensated', it has past the point of being able to repair damage, so you are pretty much stuck with cirrhosis. You have at least removed the cause of the ongoing damage by cutting out alcohol. With a lot of TLC you might be able to slow the progress of cirrhosis, and minimise side effects. What you dont get at this stage is recovery, i.e its unlikely to get better. As long as you remain free of other health complications, you should be able to stablilise things. Just bear in mind that if you need, in the future, to medicate for something else - antibiotics, painkillers, blood pressure, diabetes, whatever, then your liver will be under pressure again and the probability is the cirrhosis will progress.

[Bolly]

Are you any medication for the portal hypertension and the confusion? Sleeping tablets will be on the 'list' of meds your liver has to process, so if you can discuss an alternative with your medical team that will be a positive step in giving your liver lots of TLC.

DIet is an absolute minefield when trying to work it out for ourselves. You are on the right track with cutting out salt, but as far as I know there is nothing wrong with chicken skin?

I assume the advice against raw fish and shellfish is in case of a bacterial infection/cross contamination from them? Maybe if you look at what pregnant women are recommended to avoid i.e soft cheese, raw egg, etc and follow that. I would say: minimise salt and sugar and in fact minimise all processed/convenience foods and stick with fresh foods. Avoid saturated fats and anything else that gives you an 'indigestion' feeling, maybe cakes, biscuits etc as they all have fats. Protein is fine, i find I prefer white meat to red meat but thats a personal things. Avoid bacon (too much salt) and sausages as protein sources. You can get protein from non meat such as pulses and nuts.

Take a good multivitamin (without iron as you need to avoid iron overload on your liver), and take a Vitamin D3 supplement, also vitamin K if you can find a multivit with that in.

[Pensylvania]

Hi Bolly. Thanks so much, for your taking the time to give me all this info, its so appreciated. No, I'm not on any medication for the portal hypertension, I am on omeprazole, spironolactone, thiamine and just take multi-vitamins myself, as well as fish oil tablets, I have also read your response to olliedog. I, like you, have never liked red meat, so generally just have chicken or fish. I didnt know you could find protein in pulses and nuts too.

I have an appointment with my Gp on the 25th of this month, so I will ask him about vitamins, I have heard elsewhere, apart from yourself as well, that I shouldnt be taking any sedatives, I wonder if Kalms, (that herbal 'sleep-aid' tablet) will help instead, I will ask him, and I'm really glad you said about avoiding bacon, because I do eat that from time to time, and cakes!, you've been the only nutritionist I've had any communication with, qualified or not!, In fact your probably more qualified than some of the professionals!

And, yes, it Does seem like a veritable minefield!, thats a great way of putting it! I am going to try my best to avoid processed and convenience foods. I was actually totally shocked when on a recent visit to McDonalds, the chips were already salted!!, -lots of it too. I will follow your suggestions, thank you once again, its heart-warming to know there are people like you who care enough to help people like me, (and it would seem, there Are lots of us..), who don't know, and are confused and worried. I will let you know how I get on at the Gp's, Thanks Bolly, your a gem. Penny x

[Bolly]

Hi Penny

Best of luck with your GP appt but bear in mind that a GP is a 'generalist' not a specialist. Mine admits that I am better informed on liver disease than he is, and referred me to a hepatologist who is properly trained to treat liver patients. I doubt your GP will be the best person to get advice on about vitamins, I suspect they will ok you to take a general multivitamin without realising that most have iron in them and its not good to overload a poorly liver with iron or it can lead to haemochromatosis. I found some Viridian vitamins on Amazon that dont have iron and do have Vitamin K. Vitamin K2 helps with blood clotting and platelets (2 things that we get low on with liver disease). My gastroenterologist suggested that as a 50+ woman I take a calcium supplement, and to help the absorbtion of that I take Vit D3 as well. Read up about recommended daily allowances of all these vitamins and find a supplement that has a good balance of all. Remember that your thiamine is Vitamin B1 so check that any multivitam wont take you well over the RDA of that. I presume you were put on this as the alcohol had made you deficient. Have your levels been checked recently, assuming you are no longer drinking and have been taking this extra thiamine for a while. I think B1 is one of the water soluble vits. No point in taking over the top amounts of the vitamins we excrete daily, such as Vit C as its just money down the toilet - literally.

Some health supplements contraindicate pharma meds, your pharmacist will be better up to date on that instead of the GP, in fact our pharmacists knowledge is badly underused.

I asked years ago for a referral to a NHS nutritionist/dietician and was told there were none in my PCT that had the knowledge I needed. I've seen them working on the frontline in hospitals, and it seems the time you get to see one is when you are malnourished and all they give you is fortified drinks. You could do some research and see if you can find a private nutritionist, but check if they have advised/treated patients like you before and are properly qualified. I've got most of my information from an online support forum for patients with hepatitis C, cirrhosis, liver cancer and liver transplants as there are people there who have the time and knowledge to research it all for others in similar circumstances. They can recommend supplements to help with sleep/stress and depression that are not pharma meds and have been taken by Hep C patients for many years without affecting their treatment.

If you have decompensated cirrhosis your sleep disturbance could be a side effect of that - did you have trouble sleeping before the liver disease? Fuzzy thinking and sleep disturbance come with the liver damage; sleeping tablets become just one more 'toxic' thing your liver will have to clear.

Do you get your kidney function/electrolytes and potassium checked regularly as diuretics such as spironolactone will affect these.

[Pensylvania]

Hey Bolly.

Well, visit with Gp ok, I asked him about being vaccinated against Hepatitis, and he said he didn't think I needed it, because, in his words "are you sleeping with a man, whose sleeping with another man?".. Yes, I think your right about the vitamins and pharmaceutical advice being best, I will track down Vitamin K as you've suggested. I'm currently getting my bloods checked once a month. I havn't had any kidney function/electrolytes or potassium checks, and to be honest, forgot to ask about them yesterday too, as my Gp had a medical student in, and apparently I am a good 'subject'.. I do know that the sedatives aren't a good idea, so am trying to cut down on them, taking half instead of a whole one a night. Yes, I did have trouble sleeping before, but no, I havn't touched a drop of alcohol in 18 months now,..though I do miss it sometimes more than others! I even dream of it! But there is no chance that I am going to fall 'by the wayside' because I want to live a bit longer if I can!..Lost my Brother 3 years ago, he struggled all his life with spina bifida, and died suddenly of a heart attack at 46. He is my top inspiration. Thanks Bolly, I will let you know how I get on with getting the vitamins you so helpfully have suggested. Hope you are faring well. Pen x