Sorry if this has been asked before. I have only just found this community and have read a lot but don't know the answer to that question.
I was diagnosed with cirrhosis 3 months ago. It wasn't a shock as I had drank heavily for years. The doctors have said it is decompensated as I had ascites and jaundice. The ascites was drained, the jaundice has mostly gone although I do look strangely tanned, not yellow.
I gave up alcohol straight away, follow a Dieticians strict low salt diet and also eat every 2-3 hours to try and get my weight back up.
I am on 25mg of spironolactone.
Is there any chance my liver can become compensated if I stick to the diet and my sobriety?
Good for you, giving up alcohol!! That's great to here. I have never heard of a decompensated liver going back to a compensated state. Have you had a liver biopsy?
Hopefully Hector or someone will be by soon to give you more informed information to your question, this forum runs a little slower than others. Be patient! Good luck meadowbank!
Thanks for the reply. I haven't had a biopsy, just an abdominal scan where they saw nodules on my liver so they are pretty sure it's cirrhosis. I see that on my notes as well as "decompensated ALD".
I asked the question as an internet search led me to a different forum where it was thought a liver could become compensated again. Everyone seems to place so much emphasis on compensated being 'better' (and rightly so) I guess I am clutching at straws and hoping my situation isn't as awfully bad as it seems.
In my heart, I know it is bad, serious, awful. I feel so alone.
Take heart, you are not alone. The link above is from Randy's profile. He will eventually check in so stay tuned. In the meantime take hope from his story, continue your good fight and cut out red meat if you haven't already.
Good luck to you and please hang in there.
I wish you all the best.
I agree with rivll, I have never heard of a decompensated liver becoming compensated. There are many things a hepatologist can do to manage your symptoms and keep your liver working as well as possible. Cut back on iron rich foods like raw spinach, and don't take any iron supplements. Avoid Tylenol, and don't take any medications or supplements without permission from your hepatologist. You should be monitored closely by your hepatologist and have CT scans or ultrasounds every 6 mo or so to check for liver cancer. You should also have endoscopies routinely to.check for signs of varies. Are you being seen by a hepatologist in a liver transplant center?
I am not familiar with the British healthcare system but you need to be under the care of a doctor who specializes in managing patients with cirrhosis which is a very complicated and specialized field of knowledge. Here is the US we with cirrhosis go to Liver Transplant Centers where they have hepatologists who specialize in managing and treating advance liver disease on a daily basis.
As far as decompensated cirrhosis reserving its progression it is not likely as your liver has been so damaged over the years that the architecture of the liver has changed and your liver is no longer to function properly (nodular growths, scarring, changes in the blood supply around the liver which are irreversible). But because you have stopped drinking alcohol you may be able to live some time without the need for a liver transplant. A hepatologist will help you stay as healthy as you can for as long as possible. Unfortunately at some point in the future you will probably need a liver transplant as your liver become more damaged and lose its ability to function more and more. You will develop more complications over time but if you are under the care of a hepatologist there can advise you on how to stay healthy and they can prescribe medicines that will help manage your symptoms.
As mention you need to do many things to stay healthy and only a hepatologist can advice you on which particular ones are most important for your particular stage of your liver disease.
By the 25 mg of Spironolactone is a very low dose so your ascites was minimal and prehaps causes by drinking alcohol which is toxic to the liver.
The usual diuretic regimen consists of single morning doses of oral spironolactone and furosemide, beginning with 100 mg of the former and 40 mg of the latter. Previously, single-agent spironolactone was
advocated, but hyperkalemia (high potassium levels) and the long half-life of this drug have resulted in its use as a single agent only in patients with minimal ﬂuid overload.
Ascites is the most common of the 3 major complications of cirrhosis; the other complications are hepatic encephalopathy and variceal hemorrhage.
Approximately 50% of patients with ‘‘compensated’’ cirrhosis, i.e., without having developed one of these complications, develop ascites during 10 years of observation. Ascites is the most common complication of cirrhosis that leads to hospital admission. Development of ﬂuid retention in the setting of cirrhosis is an important landmark in the natural history of chronic liver disease: approximately 15% of patients with ascites succumb in 1 year and 44% succumb in 5 years.
* Many patients are referred for liver transplantation after development of ascites.
Jaundice is a yellow color of the skin, mucus membranes, or eyes. The yellow coloring comes from bilirubin, a byproduct of old red blood cells.
Symptoms of jaundice commonly include:
Yellow skin and the white part of the eyes (sclera) -- when jaundice is more severe, these areas may look brown
Yellow color inside the mouth
Dark or brown-colored urine
Pale or clay-colored stools
Altered Blood and Bile Flow. The changes in blood and bile flow have significant consequences, with both the liver and other organs responding to the altered flow:
The small blood vessels and bile ducts in the liver itself narrow (constrict). Blood vessels in other organs, including the kidney, also narrow.
Blood flow coming from the intestine into the liver is slowed by the narrow blood vessels. It backs up through the portal vein and seeks other routes.
Enlarged, abnormally twisted and swollen veins called varices form in the stomach and lower part of the esophagus to transport the blood diverted from the liver.
Bilirubin also builds up in the bloodstream, resulting in jaundice, a yellowish cast in the skin and eyes, as well as dark-colored urine.
Fluid buildup in the abdomen (called ascites), and swelling in the legs (edema) are common.
Cirrhosis can cause many serious complications including:
Ascites (fluid buildup in the abdomen)
Variceal hemorrhage, severe bleeding from varices (enlarged veins in the esophagus and upper stomach)
Spontaneous bacterial peritonitis, a severe infection of the membrane lining of the abdomen
Hepatic encephalopathy, impaired mental function caused by buildup in the body of toxins such as ammonia
Hepatocellular carcinoma, a type of liver cancer
Hepatorenal syndrome, when kidney failure occurs along with severe cirrhosis
Dietary and Lifestyle Changes
All patients with cirrhosis can benefit from certain lifestyle interventions. These include:
Stop drinking alcohol.
Restrict dietary salt.
Follow a good diet plan
Get vaccinations for influenza, hepatitis A and B, and pneumococcal pneumonia (if recommended by your doctor).
Inform your doctor of all prescription and nonprescription medications, and any herbs and supplements, you take or are considering taking.
The most important thing you can do is stay alcohol free for the rest of your life.
Best of luck to you.
Thanks everyone for responding and for the information. Basically you have confirmed what I already know and have read myself so many times. I've had another cry but that won't help will it?
To answer a few questions:
- I rarely eat red meat and know to avoid iron thanks. I am a salt bore and I am sure my family think I am a bit crazy
- I don't take any medications apart from the spiro and strong vitamin B compound I was prescribed. I have had some bad headaches but I just put up with them.
- You don't get referred to a heptologist in the UK until you are considered 'bad' enough. You cannot self refer to one unless you pay to go private. I am a single mum on benefits/welfare as 2 of my 3 children are disabled so paying isn't an option. I am just seeing a gastroenterologist at the moment.
- I have had 2 ultrasounds. No growths were detected so far.
- I am having a gastroscopy in August to check for varices.
My ascites was huge! I had 13 litres of fluid drained to my shame. Once I was discharged, I was on 25mg of spiro and 40 mg of Furo. Then I swelled up again and my local doctor increased the Furo to 80mg until I was told to stop taking it when I saw the gastro doctor 2 weeks ago. She also told me not to take Lactulose unless I was constipated.
- Blood tests and ultrasounds show my kidneys, spleen and gall bladder are fine for the moment.
So, at best I've got 5 years? My kids won't even have left school by then. I have been so selfish. The best I can do is follow the advice of the doctors and cross my fingers.
Best wishes to everyone. You have been very welcoming and helpful.
A few comments as someone who has been waiting for a liver transplant for 3+ years. Headaches are not a symptom of cirrhosis so you should know your headaches are unrelated to your liver disease.
"- You don't get referred to a heptologist in the UK until you are considered 'bad' enough."
In the US as I had posted above, patients who develop ascites especially tense ascites (massive fluid retention) are commonly referred to liver transplant centers as well as any patients that have signs of decompensated cirrhosis because the only treatment for decompensated cirrhosis and then End-Stage Cirrhosis is a liver transplant. What the protocol in the national health system is I don't know but you can be far from a referral to see a hepatologist.
"In 2011-12, a total of 726 liver transplants were carried out in the UK. However, the number of people who need a liver transplant is much higher than the number of livers donated.
For adults, the average waiting time for a liver transplant is around 142 days, and for children it is about 78 days."
"Once I was discharged, I was on 25mg of spiro and 40 mg of Furo. Then I swelled up again and my local doctor increased the Furo to 80mg until I was told to stop taking it when I saw the gastro doctor 2 weeks ago."
These are not the proper doses of these medicines. They have to be use in combination of Spiro 100, Furo 40 other wise they will not work and they will cause high potassium levels. High levels of potassium can cause cardiac arrest which is life threatening. Scary that these doctors don't know this very basic fact about prescribing these meds for cirrhotics.
Hepatology Magazine February 2013
"The doses of both oral diuretics can be increased simultaneously every 3 to 5 days (maintaining the 100 mg:40 mg ratio) if weight loss and natriuresis are inadequate. In general, this ratio maintains normokalemia.
Usual maximum doses are 400 mg per day of spironolactone and 160 mg per day of furosemide.Furosemide can be temporarily withheld in patients presenting with hypokalemia; this is very common in the setting of alcoholic hepatitis."
"She also told me not to take Lactulose unless I was constipated. "
Lactulose is not for constipation. It is for patients the suffer with hepatic encephalopathy (HE). HE happens when a patient becomes confused, have poor memory and other altered level of consciousness, stupor and finally coma as a result of toxins not being filtered from the blood by a cirrhotic liver. In the advanced stages it is called hepatic coma or coma hepaticum. It may ultimately lead to death.
"So, at best I've got 5 years? "
The quote didn't say that it said 44%, less than half of patients with ascites at 5 years will have liver failure and need a liver transplant. In fact everyone is different in how their liver disease progresses so not even a hepatologist can tell you exactly how long you will live. Besides as I said there is no reason to die as a liver transplant can save your life and you can life many years after a liver transplant.
So before you assume the worse you should at least know the reality of cirrhosis and liver disease. A number of us here have been living for years with cirrhosis and when we become decompensated get listed at liver transplant centers so we can get a transplant and live many more years. You only have few signs of decompensation and are far from liver failure or fatal liver cancer so there is no reason to even worry about dying any time soon. Saving "The best I can do is follow the advice of the doctors and cross my fingers." sounds an awful like giving up before you have even started fighting for your life. Your situation is not fatal and you have kids to live for so I don't understand why you feel so powerless to do anything when you have many options available now. Surely everyone in Great Britain with beginning decompensated cirrhosis doesn't plan on their life being over in a few years.
I would suggest you learn about cirrhosis so you know what the real facts are. Cirrhosis is not a death sentence by any means. In the worst case you will need a liver transplant. That is not the end of the world either.
I wish you good luck and hope you get referred to a hepatologist soon.
Wise words Hector. I guess although I expected the diagnosis, I am looking at the bleaker picture. I need to regain strength, re-group, learn, read, question. In the past I have concentrated my efforts on learning everything about my childrens disabilities. Time to turn the spotlight on myself I think.
I will most certainly be questioning my meds when I next see the gastro doctor and enquire about a referral to a hepatologist.
I am sorry to hear about your diagnosis but let me assure you that you are not alone. 3 years ago I found myself in a very similar situation. I was 38 diagnosed with decompensated alcoholic cirrhosis. Just as you I was not surprised, I ignored the warnings and thought only about the drink. Just as the others have said maintaining your abstinence is by far the best thing you can do for yourself. Today I still have decompensated cirrhosis but my symptoms are treatable. The transplant center evaluation gave me a prognosis that transplant may never be required and to keep doing what I have been doing.
Everyone has been so informative there really isn't much I can add but to tell you cirrhosis is different for everyone. There are different causes and persons react differently (body and mind). Plan to do better than the statistics, unless these statistics are based on those with alcoholic cirrhosis alone then they are irrelevant in your case. Learn all you can so that you may better communicate with your doctors. In most cases of ALD (alcoholic liver disease) you can expect the largest increase of liver function within the first year of abstinence to continue/resume drinking will be terminal.
Please take a look at these two threads, I think they can help.
Sounds like a great plan. Since you have educated yourself about your children's disabilities you are experienced in knowing how to go about it. Knowledge is power. Remember it all takes time. As long as you consistently are curious about what is happening to you you will be amazed by all you will learn over a year. I was diagnosed with cirrhosis in 2007 and decompensated in 2009 to I have had plenty of time to experience the complications of advanced cirrhosis and its treatments, navigating the health system and reading all I can in the hepatology literature to learn what is happening to me.
We must all advocate for ourselves. No one has an easy job managing their advanced cirrhosis and the complexities of the health system.
Keep advocating for yourself. Just do it diplomatically as possible so you not alienate the very people you are dependent upon to help you. A patient that advocated for themselves will get the time and respect of the doctors.
Hector - you always put the word out... Meadowbank - I felt the same way. I was drained, put on diuretics. Crazy ninja diet. I had hep c and treated for it, but Cirrhosis is NOT a death sentence. Even end stage. There could always be a portion of your liver that is carrying some of the weight. It is a huge organ that does try and regenerate.
My portal vein closed off and I'm back to flowing in the right direction now. I don't know how or why. I'm still limited. Always will be. If it comes down to it, I will try and get on a transplant list like Hector.
Decompensated liver or not? Who knows. I'm alive and that is what counts. I know it's scary business.
Hang in there. xo Karen:)
The decompensated liver can't regenerate because most of the liver cells are dead and the liver consists of scar tissue. When the liver tries to regenerate it creates more growth of nodules throughout the liver. This is not functioning liver scar tissue build up so no new functional liver cells are regenerated. Meanwhile the blood is routed around the liver through collateral veins and finds it way back to the heart. This is how varices and collateral veins around the abdomen are created. All caused by scarring with caused portal hypertension and the resulting complication of complete cirrhosis.
Each patient is different so no one can say what will happen to a particular individual be we can speak in general about the progression of liver disease and liver failure. Liver transplant is for that exact situation.
Liver cancer number 6 coming up soon for me. AFP still 600 and not eligible for transplant.
Howie, your AFP of 600 is one heck of a lot closer to the 'magic number' of 500 than you've been in awhile. Believing with you that #6 will be the charm!! Many thanks for the knowledge and generosity of spirit that you so consistently share -
Yes, my AFP dropped 1,320 points (!) after PEI treatment. Just have a ways to go to get under 500 long enough to get a transplant. I will find out tonight what the plan is going to be. Hopefully another treatment of ethanol injection in the same area to kill any remaining tumor even though the MRI says no tumor found. MRI are limited in what they can see so it may be missing it. Obviously this tumor is a super AFP generator for only a 2.0 cm tumor.
In September my MELD score will be 35 which should put me very near the top of the list except for critical cases so maybe the timing will all line up for a transplant for me?
Well said, Karen. Howie IS da BOSS!...in the most positive and flattering context of that word. I'd like to think that we all have at least a portion of Howie's determination, persistence, grace and (even on occasion...) humor. And of course perhaps the most obvious...his generosity. I cannot imagine being in his present state of health - and yet always making time to help the rest of us. We love ya, Howie - and are believing for a new liver for you soon, before the arrival of the New Year -
Hi, Went from near death to compensated liver for last 3 yrs. Had nerve disorder and immune disease that had quietly attacked my liver (surprise!). I chose to drink heavily for 4 yrs (self medication and stupidity) and boom. Stopped drinking but had jaundice, acites, a liver stent, esophageal banding and hepatic coma. On transplant list, but MELD 11 meant no transplant. Docs' treatment was meds and putting out fires. I became proactive and ate a cancer fighting type diet (massive amounts of produce), with virtually no salt or processed foods. Exercised daily (even in bed) took meds and did 2500+ hrs of research on liver/nutrition/ body systems. I learned a lot and used my knowledge to lower MELD to 7, don't need stent, port-o-cath or transplant. Still take meds and supplements prescribed/ok'd by doc. Some are for the Sarc and RLS. My liver numbers have been steady for years and most are normal or near normal. If I do mess up with diet and my numbers change, I can fix it usually in a week. I do have some complications due to the cumulative effect of my medical problems.
You are on very little medication. If you keep clean and watch your Tylenol consumption (plus meds with added Tylenol), eat right and read all you can. Good luck.
It is possible and rare for a liver to change states from compensated to decompensated. I realize this is tantamount to heresy when discussing cirrhosis. I was hospitalized ~8 times 2 years ago and given 6 months to live and then less than 5 weeks to live. Cirrhosis was diagnosed by CT showing regenerative nodules followed by a biopsy showing fibrosis but not bridging fibrosis. I chose to live every day as it came. In the beginning I was on 12+ meds and supplements. I could not even walk , was yellow to pumpkin orange and I had several bouts of hyponatremia (with swelling of the brain, plus a unusual and rapid response when my doctor prescribed Prednisone, white blood cells spiked with very rapid swelling). My MELD score hit in the 50's .I had multi-organ failure and thrombosis of the hepatic artery and veins. I was not a candidate for transplant. In every statistical analysis there will be an outlier. Do your best to stay positive, I freely admit that this is difficult. I turned to faith and prayer. This was my experience, I also found that changing from decompensated to compensated is rather unusual even heretical, if one searches the web or PubMed. You are in my thoughts and prayers. Will things stay this way for me, maybe so? My bilirubin is now 2 down from a high of 29 and the other typical blood work is normal(no ascites, take low doses of spironolactone/Lasix combo every other day). One doctor tells me to stop taking these and monitor things while another insists on the every other day diuretics.For now I try to enjoy all that is around me and keep to a low salt (under 2g) and low iron diet..
There are very few times that I actually miss alcohol. Maybe when out with friends for dinner and they are all enjoying a nice pinot noir that I recommended. Or, I have thought, on a Really hot day, wouldn't a beer taste great right now?
But then I think, you drink and you will die in a very unpleasant way, and order a lemonade instead
Or sometimes when I'm out I ask for a nonalcoholic beverage in the fanciest glass that they have. It's fun to see what they come up with
So many other things to enjoy about life that giving up drinking seems like a small price to pay for the chance to be healthier
I do realize that this is much more difficult for some people so thanks for sharing your experience
Now, let's figure out a way to reverse liver damage!
Hi Meadowbank , I live in the uk,you can improve your liver and live a longer life,I have in 2008 ,I was admitted to the hospital with liver failure through alcohol abuse they gave me 20% chance to live,my eyes all over my body was yellow I look like I was 8 months pregnant with ascites, which they drained,portal hypertension,hepatic encephalopathy,they did a ct scan and said my liver has shrunk in size and was badly scarred, and a Transjugular liver biopsy because I was so ill,was referred to a dietician, when the ascites went,I look like a bag of bones, I have alcoholic cirrhosis stage b-c, when I left hospital I was told never to drink alcohol ever again,6 years on, I have not drink alcohol,I am on a low salt diet, no processed foods,the only meds I am on are vitamin b,I walk every day I can't run no energy but that's the cirrhosis it don't store glycogen (a carbohydrate that produces short-term energy)I have to eat small but often every 2 hours, I don't have to see my specialist at the hospital anymore just my GP,I have a Ultrasound scan every 6 months and my bloods done to check for cancer, my doctors are very pleased with me my liver is now smooth and normal in size, I said to my doctor has the cirrhosis gone he said no the damage is in side but I've improved my quality of life and can live to a old age I never thought I could live this long but we all can just keep away from the alcohol it's hard but you can do it one day at a time I have bad days but I am thankful for every day I stay sober!
There is a drug presently in second phase of human clinical trials here in the USA - it has been proven to reverse liver scarring (fibrosis and cirrhosis) - and has generated much excitement, as you can imagine. You can Google the term "GR-MD-02" and read all about it.
I'm told (by reliable sources who are actively involved with the trials) that it has been granted an FDA 'Fast Track' status - and will likely be available within the next approx. 3 years.
Very nice to 'meet' a fellow Uk person Taz. Well done on your sobriety!
Your story really gives me hope that I can continue to live a good life for a fair few years yet. Last year I thought it was goodbye Vienna, I really did. Now everyone I meet tells me how well and happy I look.
My husband was diagnosed with cirrhosis in March 2012 following 2 years of very poor health;severe rectal and oesophageal bleeds requiring several transfusions, gall stones and acities...he was abstinent since diagnosis and in April 2014 was told his liver was compensated even though he the consultant has said he only has 10% liver function. If he continues to abstain hopefully his liver will continue to compensate. He has not been hospitalised for one year now and is relatively well. Good Luck to everyone...think of others as its not only the patient who suffers.
Finding this forum was a god send, I haven't been disagnosed yet but I have the symptoms of alcoholic cirrhosis. I started having symptoms a week ago but can't get an MD appt until next Wednesday. I have spent the last week crying and thinking of making final arrangements. My husband has not been very supportive, he has an whatever it is you did it to yourself attitude but he drinks as well. I have no one to talk to and feel very alone. reading through these posts have given me a glimmer of hope. Thanks
Yes a decompensated Liver can return to being compensated, how ever it will remain scarred. A Liver is classed as decompensated when it can no longer carry out its functions and all the horrible symptoms show up, ascites , jaundice etc. If you stop drinking the Liver has a good change of atleast gaining some small amount of function back and returning to a compensated state, where the ascites and jaundice resolve. But cirrhosis is generally considered progressive so over time the benefits gained from stopping alcohol will slowly be taken back by the progressive scarring.
We are at our wits end trying to deal with my husbands cirrhoses the doctors told us four weeks ago he had two years to live Friday we got a letter now they have said 1 year to live my motto is where there is life there's hope so like yourselves take care of himself reading this forum we don't feel alone he has diabetes as well which I am sure does not help he has ascites they drained 17 litres last week he is being referred to kings but don't gave any hope of him having a transplant . I would love to hear our doctor say well we will try this and that and whether tat will help to maintain a healthy life as much as possible but what we get is going and do a bucket list don't waste time trying to find something thankyou guys for your posts keep going X
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