I've had ALD with varices since 2011 any one have any info on prognosis

I recently had blood tests showing normal liver function but abnormalities in my clotting and anenia the tests were for gout initially but they had to check my liver function.

Now I've had further tests been rereferred seen the wrong surgeon, had more blooded done not had results and then a referral back to the liver surgeon and the gastro for an endoscopy.

I've had a major variceal bleed resulting in a 5 week hospital stay which included numerous bleeds massive weight loss and ascites fluid on the legs that swelled until the skin just seeped out.

I had a long stay in icu and the family were all called to my bedside but I managed to survive and the only bleed since us the week following my release when one of my bands gave way.

I haven't drank since being admitted I take all the pills but I'm suffering with allsorts including shocking memory and mood swings, zero appetite meaning being underweight, I can't concentrate anymore and I can barely sleep but I'm always fatigued, breathlessness, anxiety, and depression I itch constantly and my doctor don't seem at all bothered any answers please anyone on prognosis.

The doctors don't seem in any rush to give me my results and I'm a tad concerned. Said wait til my appointment in two more weeks this is nearly a month ago

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  • There are medical practice guidelines for monitoring/treating/dealing with patients with cirrhosis, but they focus on managing the side effects such as ascites and portal hypertension rather than treating the liver. In other words, patients dont normally 'recover' from decompensated cirrhosis as the liver is too damaged to heal itself. The most clinicians can do is monitor i.e do endoscopies to assess the likelihood of a varices bleed, and treat the ascites etc with medication. Also they will watch out for emergency side effects, such as bleeding varices, passing blood in the stool, or needing to have ascites fluid drained.

    I'm not sure what the protocol for monitoring is, but would assume that in the early stages after diagnosis you would have bloods taken frequently. Two years down the line as you are, I'm not sure how often you will be assessed but it seems unlikely it would be weekly any more.

    This is an extract from the AASLD guideline on monitoring patients with ascites as a side effect of liver disease:

    "Frequency of follow-up is determined by response to treatment and stability of the patient.

    Some patients warrant evaluation every 2-4 weeks until it is clear that they are responding to treatment and not developing problems. Thereafter, evaluation every few months may be appropriate"

    This is just for ascites. I expect there are guidelines for frequency of monitoring portal hypertension, hepatic encephalopathy etc.

    If you have any correspondence from your specialist/consultant it should have a phone number for their secretary or even an email address. You could try emailing to chase results, or telephoning the secretary to check when your next clinic check up is.

  • Was the hospitalization for the bleeds in 2011 or recently? If it was in 2011, and that was when you stopped drinking, then you have done what you can to remove the cause of the live damage. If you were diagnosed in 2011 but continued to drink until recently, I'm not sure what to say, hmm. But I'm guessing from your post that this crisis was in 2011 and that now, in 2013, you are continuing to be monitored but are worried that you are not being monitored well enough - is that the gist of your post?

    All the symptoms you list are symptoms of decompensated cirrhosis, and the best the medics can do is treat these side effects and keep an eye on you to try and prevent more emergency situations like you had in 2011.

  • Thanks for replying bolly much appreciatted.

    I was admitted in 2008 with hepatitis and liver failure I relapsed in 2011 was admitted with a bleed resulting in a coma.

    I have been bleed free since 2011 but I've never recovered physically from that.

    I am like a skeleton have no appetite, nausea, insomnia I've not slept properly in weeks I have no concentration span at all and terribly emotional.

    It's the fact my gp didn't even pick up on these things in particular when I caught my leg about 6 weeks ago and although it wasnt the biggest cut I bled for hours. He didn't even suggest looking at my bloods and until my gout episode he'd not rereffred me since august is asked over and over again and he overlooked it and said they'd be in touch from the hospital.

    Other than that my weight an issue my girlfriend had asked if he could look at giving me nutrition shakes like before to help me gain weight and start getting fit as I've not got the energy or strength at all.

    Anyway to cut a long story short.

    I was told in 2012 I had a 30% chance of a fatal bleed and I've stuck to everything I've been told and I was told I'd need a transplant as my condition had become to severe to control forever and although I've had no further rebleeds since but generally I feel terrible and that is affecting my depression.

    I just get the feeling my gp isn't interested and I have got to the point of being scared to go anymore.

  • I wondered bolly but given my decompensated cirhhosis and the symptoms which have gradually got worse since before Christmas 2012.

    The itching is so bad I've scratched myself raw on my hands and legs.

    I'm concerned now that if it is moving on it has over a short period and I've not altered anything so am I possibly further on than I thought I was?

  • Although you have been in hospital I'm still not sure if you are under the care of a hepatologist or gastroenterologist at a hospital... or just under the care of your GP? You only mention your GP and I sympathise with your concern that they arent interested. GP's are generalists, not specialists. Mine, for example, is pretty much limited to running standard blood tests (LFTs, FBC's etc). My GP cant even prescribe hepatitis meds, these need to be taken under supervision of a hepatologist. Its normally a gastroenterology department in a hospital, or hepatology department, who will monitor someone like you and run procedures such as endoscopies.

    When you were admitted to hospital in 2008, were you placed under the care of a hepatologist or gastroenterologist? I'm not sure why your GP is saying you need to be 'referred', were you placed under the care of a specialist when you were in hospital in 2011 during your bad bleed. What follow-up care did you have after that?

    Were you offered any treatment for the hepatitis (is it HCV or HBV?). Did you have the varices banded, sorry you may have said this elsewhere.

    When you say 'relapsed', do you mean relapsed following treatment for the hepatitis, or relapsed with drinking, or relapsed into a second phase of liver failure. Sorry to be dense, but I'm not following your story properly.

    The symptoms you have, no appetite, nausea, insomnia, no concentration span, emotional .. are symptoms of decompensated cirrhosis. Are you on lactulose for the concentration/confusion at all? Have you been in touch with your consultant/specialist about the itching. If its a bile problem, there are medications that can help.

    Re the bleeding, when did you last have an INR clotting rate taken. When did you last have a full blood count taken to measure your platelets? Why does your GP not have data on you re your clotting/platelets?

    Normally, when you go to clinic (are you on at least 6 monthly clinic check-ups with a consultant?) you have bloods taken and copies of these are sent to your GP. Is this happening for you?

    Was it your consultant who told you that you will need a transplant? If so, its this consultant who should be monitoring you/looking after you. Assessment for transplant is a lengthy process Once on the list, the waiting time is on average 5 months (or at least it was between 2007-2010), but for some it can be much longer depending on things like blood group. If you have active HCV, a transplant wont cure the HCV.

  • After the 2008 episode I was under the gastro dept for just over 18 months, was discharged as I got my liver function back (miracle) but relapsed on the drink again ended up with gi bleed hence the decompensated cirrhosis I havent drank since was with a specialist moved doctors in 2012 and until then had been seeing the same specialist but missed an appointment and as id moved areas needed referring to a new hospital but wasnt, since then ive got worse seen a specialist in march took bloods arranged endoscopy first week in april and follow up with liver and gastro depts.. But although I was told I will need a transplant when I was discharged from hospital and my follow ups but as it is ald wasnt acceptable for a transplant but as I say ive been lost by my gp not doing his job.

    Hes even gone as far as writing a sick note saying I was under investigation for ald and ive had my esa support withdrawn and am having to go back to work.

    Now im not sure about this but arent I getting worse isnt it a progressive condition or can you miraculously recover? I wish.

  • Oh dear, it does seem you have fallen through the net with mix-ups when you moved area and doctors. Hopefully you will get back on track with a fresh care plan following your April endoscopy and follow up liver/gastro clinics. Hopefully your files from 2008 and 2011 will have found their way to your new medical team, but sometimes things go astray. I've found it best to keep copies off all my own paperwork, regardless of which doctor or hospital produces it, as I see 4 different medics in 3 different hospitals + my GP and cant rely on them all communicating with each other. The trick is to become your own best advocate, and keep copies of as many test results/procedure results as you can.

    Can you miraculously recover from decompensated cirrhosis? Never say never, but personally I've not heard of anyone 'recover' to the stage where their liver has no evidence of scarring or stiffness. It should be possible to slow down the progression, but when you get to the stage where you are having to take medication to control side effects, your liver is back to having to process toxins (meds) and not getting the total rest it would need.

    I initially assumed that by ALD you were meaning 'Advanced Liver Disease', but realise you may mean Alcoholic Liver Disease? I'm guessing by hepatitis you meant inflammation of the liver, not viral hepatitis?

    There are others on here with more knowledge of alcoholic liver disease than I, so I cant comment on having ESA withdrawn, though it doesnt sound like you are anywhere near 'fit for work'. I think things have got a bit complicated since May last year with various changes to the benefit? I suppose it depends on whether alcohol damage is classified as an 'illness' or 'disability', I'm afraid I'm not up to speed on this. I think any recent drinking might affect your eligibility to be assessed for transplant.

  • I had a breakdown which resulted in me turning to drink in 2008 relapsed ended up with a massive bleed not drank since.

    I'm not looking for advice on esa or benefits that's the least of my worries I just hope I've not been lost in the system for too long.

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