New to this !

I was diagnosed with cirrhosis in September 13. I became acutely unwell and was admitted to hospital. I had varices banded, blood transfusions and ascites drained and packed off home. The problems were all alcohol related and I haven't touched a drop since. Since then I have had many ups and downs. I'm not sure how badly damaged my liver is. There was talk of a liver transplant but I'm told that I am not ill enough. I currently struggle with a variety of symptoms but I'm never sure whether I should be contacting my GP or my clinical nurse specialist. I tend to just plod on.

I wondered if any-one has been prescribed lactulose due to dis-orientation and 'vague episodes' ? It apparently binds excessive amounts of ammonia which cause this toxicity. My world is small anyway but if I take the lactulose I worry about leaving the house ( I now know every toilet in my local area). I'm quite happy within my vagueness, it just worries everyone else !

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  • You need to take the lactulose, it helps with your vagueness, which if you drive is a worry, I know this to my dismay. It also gets rid of the toxins that build up in your liver. I never had issues with getting to a toilet in time...just left the dose until I had been shopping or whatever. Your doctors , consultants will keep a close eye on your blood results etc. If you feel your symptoms are getting worse I would contact the clinical nurse, they tend to know more specialised stuff. Livers can regenerate to a certain stage but never back to normal especially as symptoms are getting worse. They will know when you need a transplant. Well done on not touching alcohol, it will show the specialists you are serious about your condition. Any questions just ask, I have an auto immune disease and I had my transplant in January 2014.

  • Well it's serious.

    Cirrhosis means in effect that the entirety of your liver has been damaged over time and comprises mostly of scar tissue. Scar tissue doesn't do any work. Like a car on its last legs it's functioning but very badly - hence the complications of ascites, varices and encephalopathy (the confusion) which is like leaking oil and breaking down.

    It's a complicated disease because the liver affects everything else.

    1) You need to keep in close touch with your doctor, your nurse specialist, your consultants and here. This is not a situation where you should plod along hoping for the best - you need to do the appropriate thing in a timely fashion.

    2) Sadly, you can't drink again. Ever. It will make it worse. In this situation worse means death (or transplant - which you won't get if you drink).

    3) If you're lucky a combination of no alcohol and leading the healthiest lifestyle you can along with any meds will keep you alive and save you getting to the point of needing a transplant. If your condition gets worse you'll either die or need a liver transplant - which you will only get if you have not been drinking - you need to discuss this so you're not taken by surprise by it later. They will consider transplant when they can't keep the various complications in check.

    3.5) Stop drinking, start eating more healthily - lots of veg. Take the lactulose - don't embrace the vagueness it's has to be kept in check as it's dangerous, discuss salt reduction with docs to prevent the ascites - the salt your liver can't process causes the fluid retention but the taste for salt is acquired when we're young and you can change it within a few weeks.

    4) What I've written above is very matter of fact but it's what we all have to deal with. Wish you the very best of luck, and come here for support advice, advice and double checking.

    Best of luck.

  • Thanks for your comments, I found them really helpful. I try to deal with my situation with optimism and humour, if I didn't, I wouldn't get out of bed. My specialist says I have reached a 'plateau' within my illness despite the confusion becoming more evident. It's a watch and wait situation.

    Many thanks again for your support.

  • Are you not having follow ups at a liver clinic?

  • Hi there, I'm pretty new to this site too but it sounds like you have been prescribed Lactulose for your liver and not just for the toilet. It's for helping with confusion (hepatic encapholopathy) I would see a liver specialist or your clinical nurse because this condition requires alot of time and effort to get well. I wouldn't be able to just plod along. Hope you're okay & I hope this helps.

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