Dear all, I'm 42 and also an alcoholic with 5 weeks sobriety. I went into hospital 5 weeks ago with jaundice and ascites and was there for 2 weeks. Turns out I have Decompensated Liver Disease/Cirrhosis. I have an endoscopy examination this coming week and then presumably I will be hold where I stand, what stage I'm at etc. I just wanted to ask for some advice, I feel really in the dark as my doctor just says wait and see. And the dietician in the hospital just said eat more protein and carbohydrates at night. I don't add salt to anything and have changed things a lot, vegetables and protein especially and my weight has stabilized. I also suffer a lot with stomach pain especially after eating. Is there a good way of managing pain with an impaired Liver?
I just wanted to ask for advice really, has anyone been in the same situation. What is the ideal lifestyle I should be living. Reading the internet is depressing as I keep seeing mortality statistics and things like that which just sets of a panic attacks.
Many thanks, Matthew
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mjt42
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I was in a similar position a year ago. I have cirrhosis and was very sick with a deep rooted infection, was admitted into hospital and was diagnosed there. I was malnourished, a shade of yellow that Homer Simpson would have been proud of and a tummy that looked much the same as his! The infection had caused my liver to go into decline and it was touch and go for a few days. Thankfully I pulled through and after a lot of careful attention to the advice my consultant and dietician gave me, I’m well and my bloods are normal. You’d have no idea how unwell I’d been if I walked passed you on the street. The first thing is to kick alcohol into touch. Accept you’ll never drink again and throw anything you have at home away. It’s great you’ve been abstinent for 5 weeks, well done. The next is to stop googling! The BLT website is fab and has really good information. The NHS web site is good too. Don’t read any other stuff. You’ll be booking your own funeral otherwise. Listen to what you’re clinical staff say this week about your condition and follow what they tell you. Essentially there are three golden rules; no alcohol, correct diet, exercise. In terms of diet, I find mine has changed a bit over time. At first it was high protein, high calories. Now I put on weight if I eat like that so it’s high protein lower calorie. I keep an eye on salt, fat and sugar. Make sure you get regular contact with a dietician at the moment, they will help you refine your diet to suit your condition and educate you on how to stay well. A high protein (70-90 g per day) Mediterranean diet suits me. I also try to walk or run every day. Exercise helped me build up my muscle mass and I’ve found it’s a good way to relax. I’m fitter than I have been in a long time. It is a change of lifestyle, but it is a better one too. Keep us posted on how you get on.
Many thanks for your reply. I'm really pleased that your feeling well after your experience in hospital, scarry stuff. Cheers for the advice, I have essentially tried to do the same sort of diet as yourself, low salt, low fat and plenty of vegetables and salad with high protein things like eggs, salmon and chicken and low salt and fat cheese. I shall try and get to see a dietician as well.
Also definitely agree with you about the googling of things, not again.
With regards to the stomach pain after eating it may be that you have issues in your tummy and/or oesophagus which is why you are having the endoscopy. My hubby has portal hypertensive gastropathy and had many varices in his oesophagus - one of his early symptoms was agonizing indigestion type problems especially after eating anything too acidic (oranges, apple juice, coleslaw and for some reason lasagne). He watches what he eats (he's on the high protein/high carb/low salt diet too) and is prescribed Omeprazole to protect his stomach lining. He no longer has the tummy issues.
Many thanks for your reply and I'm sorry for the late reply. I think part of it is I feel quite in the dark as to what I'm dealing with plus the realisation that I've done this to myself.
I'm really glad your husband has some relief with Omeprazole, I actually get prescribed this but haven't taken it for a while, I shall definitely try that avenue. I've taken on the diet you mentioned (nice to try new things) as that seems to be such an important thing when tackling this disease.
Many thanks for your hopeful and positive response.
As a doctor has said, at this stage when first caught it is often entirely up to the patient unless he is so bad he is on the verge of "transplant or death". You do not sound anything close to that.
The patient who gives up or does the opposite (goes into denial) will not have a good outcome. The patient who does turn things around, no alcohol, better diet, moving about, takes all the medicines the doctor tells you, such a person can turn things around (this is called recompensating the liver) and live many years. Poster Katie has said her husbands liver doctor has had patients on his roster for over 20 years and my doctor has said the exact same thing.
Paraphrased quote "I now believe they will all keep it up and will die with cirrhosis and not because of cirrhosis. They will get hit by a bus or something".
In the off chance fate gives you a bad turn and you cannot turn it around, I personally (speaking as a non-doctor) suggest getting a "living donor" transplant. They are done frequently in India (good price but long flight) and Turkey (twice the price but much closer). Both countires have survival rates as good as the USA, UK, etc. It is something to think about in the future.
For now, just live the right way. Some people bounce back rapidly and why shouldn't that be you? Keep your chin up, liver disease is NOT a death sentence!
Check out this Newsweek article - this is new, came out just last week in the USA!
What a great message to receive, to be honest ever since reading some information on the internet I've been really quite fearful and depressed about all of this so it's been great hearing that if I can be as positive and healthy as possible there's hope, which I've been lacking recently.
I shall definitely read that article and stay away from certain Google searches.
Many thanks for your reply and I'm ever so sorry for my late reply. I've just had the endoscopy examination and unfortunately they found varices and signs of portal hypertension, I feel a bit depressed about the whole thing but determined to turn my life around as best I can. Could you tell more about the reversing of decompensated to compensated, I could do with a bit of hope.
Hi mjt42, I just wanted to point out that you posted your question as a reply to mtk0925. If you want it to be answered by the general forum, repost it at the top level of this thread or start a new post.
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