Avatar universal

Stage Four Cirrhosis - Mortality

Hello!  I am a 58 year old female that was just diagnosed with stage four cirrhosis after a liver biopsy, numerous tests, being sick since having pneumonia in September, 2014, and being in and out of the hospital several times, the last time two weeks of sheer hell, kidney and liver failure.  Long time wine drinker.  Mainly they tell me what I don't have, but confirmed ITP platelet disorder and stage four cirrhosis I do have.  My liver specialist and hematologist visits after leaving the hospital were bleak.  This will continue to occur and I will die.  I have completely changed my lifestyle, eat a natural diet and lean protein, no alcohol, counseling and PT for strength and endurance.  Because of my platelet disorder, I am on 20 mg of prednisone, lowering slowly to be off in one to two months. I am also on Lasix, 80 AM, 40 PM.  I am having weekly labs and my labs, other than my platelets, have all been in the normal range the past four weeks.  Liver and kidney functions, AST and ALT billiruben, creatine, albumin, etc., all normal.  I feel great.  Never did have any pain.  I have lost 70 pounds.  My PCP is very encouraging and my cheerleader.  My question, can I get better or stop the progress of this if I continue my current lifestyle?  How can all my readings be normal if  I am at end stage liver disease?  My liver specialist said I have an idiopathic problem, when I get an infection, either my extreme sensitivity to antibiotics or the infection itself causes my organs to shut down.  This hasn't happened since I quit drinking completely, so I think alcohol intake may have been a cause.  Any guidance anyone can give me would be greatly appreciated.  I want to hope, but want to be honest with myself too.  Thank you.
33 Responses
Avatar universal

Great that your labs are holding!

You will need to get the scope, the last thing you need is a bleed out that could have been avoided with a scope and banding.  you may have none at all, some dont.
446474 tn?1446347682
I am sorry to hear that you are having such a rough time. It sounds terrible. I am glad you have your PCP supporting you through this.

Please keep in mind I can only commit on your cirrhosis as I am not familiar personally with your other health issues.

Can I get better or stop the progress of this if I continue my current lifestyle?

- If your cirrhosis has been cause by alcohol the good news is that alcoholic cirrhosis is usually reversible. Yes, it takes time but over time your liver should health itself as long as you never drink again. I would encourage you to continue with your counseling.
You don't want to have your cirrhosis advance to the point of liver failure it you can at all avoid it.

I am not sure what you mean you had" liver and kidney failure" while in the hospital?
I understand you had pneumonia which is common in cirrhotics as cirrhotics are prone to infections because cirrhosis causes a compromised immune system. In fact many infections can be fatal for someone with cirrhosis if not properly managed.

I would talk to your PCP who seems very supportive and find another a liver specialist/ hepatologist who will SUPPORT you emotionally and medically by working with your PCP to help you to manage your cirrhosis. Having a dooms-day doctor doesn't help anyone and only makes everything worse. While a PCP is important only a specialist (hepatologist) can fully evaluate that extent of your cirrhosis and mange it optimally.
Perhaps your PCP can connect you up with the liver program at University of Nebraska Medical Center. They are THE experts on cirrhosis.
Liver, Intestine, Kidney, & Pancreas:
402-559-5000 or 800-401-4444
983285 Nebraska Medical Center
Omaha, NE 68198-3285

Let me know how you are doing.
I hope this helps.
Avatar universal
Thanks so much for your fast response and some positive news.  I was a daily wine drinker for thirty years.  A couple bottles a day.  Stupidly tricked myself into thinking my liver would not be affected since I didn't drink hard liquor and red wine was healthy, right?  I had pneumonia in September.  Adjusting the Lasix has been touch and go since then.  I am type two diabetic.  I was hospitalized several times when my kidney functions showed active kidney disease and the last time with full blown kidney failure.  I had dialysis three days in the hospital.  The infectious disease doctor said my fast recovery (it didn't feel fast) was miraculous.  I have an enlarged spleen that I believe is eating my platelets, is how it was described.  I had a bone marrow biopsy to rule out an auto immune disease and a liver biopsy that came back stage four cirrhosis.  The liver doctor said on my first visit I wouldn't qualify for a liver transplant because of my other conditions.  My hematologist said no one would want to do surgery on me because of my spleen and platelet disorder.   I follow up with both specialists.  They are being kept aware of my normal labs.  The liver doctor is on staff at Nebraska Medical Center and does transplants.  I think I need just to ask a lot more questions, like why?  Sound right?  I haven't found much good news about stage four cirrhosis online.  End stage, cannot be reversed, etc.   any idea on mortality?  My
PCP says everyone is different.  No one even mentioned a Meld Score. Thank you Hector!
446474 tn?1446347682

Yes, your PCP is correct. Everyone has their own particular journey with liver disease and cirrhosis.

There is no crystal ball but...without further injury to your liver from alcohol your liver can heal itself. As you noted liver disease is usually a process that takes decades of continual injury before one develops stage 4 liver disease, cirrhosis. It isn't something that happens overnight or in a week or a month. The good news about alcoholic liver disease is once the injuring substance (alcohol in any form-it all looks the same to the liver) is gone the liver can heal itself. Many other causes of liver disease and cirrhosis unfortunately can't be stopped (autoimmune liver diseases for example) and so the progression to liver failure is inevitable. Those folks will need liver transplants at some point to continue living. So as long as you abstain from drinking your liver will get a break so it can heal itself.

As far as liver disease and cirrhosis...an enlarged spleen is a complication of advanced cirrhosis. Everyone, not just you, with advanced cirrhosis (cirrhosis + portal hypertension) has an enlarged spleen and an altered blood supply around the liver. This in turn caused a low platelet count. Many of us have lived with a low platelet count for years. So it is usually manageable until it gets too low. Down into the 30s and below. I never had a platelet count above 70,000 for over 6 years myself and had many surgeries before getting my transplant. They give us platelets if we need them during the surgery. I had some minor bleeding issues over that time but nothing too serious.
Cirrhosis + portal hypertension (caused by the scarring of the liver which prevent normal blood flow through the liver) also can cause varices (enlarged veins along the GI tract), ascites and peripheral edema (fluid retention) and other complications. So your doctors should have evaluated all of these things as well as part of your cirrhosis workup. You might want to find out want if any of these has been found and to what degree. These are used to determine how advance your cirrhosis is.
Since you have  ITP as well as cirrhosis that complicates matters but again it depends upon your particular extent of ITP and how it may affect treatment of your liver disease.

You said you 'feel fine' and your blood tests are within norms therefore you don't have End-Stage Liver Disease (also called 'decompensated cirrhosis') which is the last stage of cirrhosis and is life-threatening. Cirrhosis covers a wide area of disease. There are folks like you with normal blood levels who feel fine and those have ESLD and hospitalized and close to death or getting a liver transplant. And there are many in-between.

How advanced someones cirrhosis is is measured by the MELD score. Only those with the highest MELD score in a certain geological area (transplant region) get a transplant. If your bilirubin, INR and Creatinine are normal you have a MELD score of 6. That is as low as it goes. You typically need a MELD score of 15 to even get listed for a liver transplant and will need a MELD score in the 20s or 30s to get a transplant. Here is California you need a MELD score typically in the mid 30s. MELD only goes up to 40 so these people usually have had many hospitalizations and are suffering horribly and have been for months if not years. So let's be clear about a diagnosis of cirrhosis and End-Stage Liver Disease and its life-threatening situation.

Having cirrhosis is not something anyone wants but now that you have been diagnosed and know its cause you have the power to stop its progression and avoid its consequences. In my opinion that is a lot.

Keep asking questions. Cirrhosis is a complex disease and it takes quite some time to get a handle on even the basics. Hopefully you have stopped it in time so you will never suffer with its advanced symptoms and life-threatening complications.

Be well.
Avatar universal
Thanks so much Hector. You have given me more information than any of the doctors have.  I will post results from my next follow up visits with the liver specialist and the hematologist at the end of the month.  I am very grateful for your time!
446474 tn?1446347682
If you have any particular questions for the doctors I should suggest writing them down beforehand and bring them with you to the appointment. Usually at the end of an appointment the doctor will ask if you have any questions. During a visit we often are thinking of other things and forget what we wanted to ask. Having them written down makes it easier. (I also bring a different color pen and write down the main points of the answer).

Also bringing a close friend or family member can be helpful for support and another pair of ears.

Good luck with your doctor appointments.
Avatar universal
sorry to butt in, but:

"If your cirrhosis has been cause by alcohol the good news is that alcoholic cirrhosis is usually reversible"

this is not true at all im afraid, F1 and F2 scarring are reversible, F3 and F4 are not and considered progressive in most cases.  When alcohol is stopped the Liver can gain some function but its usually because excess fat will be removed and over time and some F1 and F2 may heal.  Chances are if you have alcoholic cirrhosis you have fatty liver and all the scarring ranges at the same time awel as some alcoholic hepatitis.  most of this will improve, but the scar tissue wont.

its not straight forward to confirm how much liver is actually left working, and MRE scan is great to map the liver.  I cant see what use a fibroscan would be at this stage.  some blood test can give a good idea.  But as long as your LFTs are ok you in a "compensated" state, the problem is that over time the F3 and F4 will progress and slowly less and less Liver is left functioning.

At 58 years old, if you can get to a meld of 10 or under  and stable, you might not have to worry about the Liver function itself, maybe the risk of bleed outs more because (sorry to be morbid) something else is likely to finish you off.

I also think you did pretty well to get to 58 after 30 years of 2 bottles of wine a day, thats about 140units a week, alot would get to end stage in 10 years of that
Avatar universal
Hector, care to comment?  I have had several MRI's that couldn't confirm cirrhosis.  The liver biopsy confirmed stage four cirrhosis.  My labs were 100% within the normal range Tuesday.  CBC and CMP done.  My platelets were up to 136,000, 4,000 under the low normal range.  All docs were very happy.  Since I have adopted this new lifestyle, natural foods only, lean protein, no alcohol, I feel great.  PT is helping me with balance and strength, counseling is helping my depression, which is fairly non existent.  Well, until I read your comment Ralph....   :(  No sign of portal hypertension or ascites.  No nausea or vomiting.  No abdominal pain whatsoever.  I had periods of sobriety throughout my life.  I am trying to have a really positive attitude and not dwell on whether "something else is likely to finish me off."  Maybe I am in denial, but I do feel really well, better than I have felt in years.  I have a list of questions for my hematologist and liver specialist next week.  I will post the results of those visits.
Avatar universal
The Liver biopsy has a risk of a false negative, its is accurate for the positive, usually ,you will nearly 100% have F4 Cirrhosis.

Its great your labs have come back to normal, the Liver should improve for around 18 months.  But the early improvement is usually eroded away as the F4 progresses, BUT this can take many years and SOME do actually stop it progressing.

Sorry for being insensitive, but something will finish us all off eventually, one or more of our organs will fail some day, I just meant that you might not have to worry about it being your Liver.  Many many drinkers die and Cirrhosis is only found at biopsy

A good case of recovery is Andy Fordham the darts player, given just months to live ascites, jaundice, he stopped drinking and starting exercising, he still has his native Liver 8 years on and its doesn't look like he is struggling at all.

Your platelets being low are a sign of portal hypertension, now with your Liver stable you will have to concentrate on varices, you will likely need endoscopys to check and maybe some beta blockers to bring the blood pressure down to avoid a bleed.  Also some people don't have much trouble with the varices, you could be one of them
Avatar universal
Thanks Ralph!  I will see what the doctors say next week.  I am going to ask for a copy of my liver biopsy and my meld score.  My platelets are almost normal.  I have never had any bleeding that I know of.  The liver doc said eventually he wants to do an upper GI.  What does that entail?   Outpatient?  I am just taking every day as a blessing and trying to feel the joy in everything around me and my family.
Avatar universal
yes get all the info you can, you get the bet results if you manage your condition. its not so hard to learn what the bloods mean etc, you will be an expert of your own health in months!

Because of the low Platelets which is indicative of Portal Hyper tension the liver doc wants to do a Upper GI endoscopy. He is looking to see if you have any veins that are starting to bulge because of the back pressure from the scarred liver.  If there is any they can "band" them and give you beta blockers to lower your blood pressure.  obviously a burst vein can be life threatening, so this is your immediate concern with you liver numbers so good.

the endoscopy is where they put a camera down the throat to check for veins bulging, I'll be honest nobody says it was fun!  most are sore a few days after.

If you can imagine your average bath sponge, get a hose pipe and put it right up against it, the water would flow through all the holes and the hose pipe wouldnt start to bulge or build pressure.  Now replace the sponge with a brick, the water  would not be able to flow very well and the hose pipe will start to build up pressure and bulge.  thats pretty much what happens with a scarred Liver and the veins attached to it.  

Although there is enough left of your sponge to produce enzymes and proteins you still have scarring that is restricting the flow through it.  
Avatar universal
Hi Hector, can you please comment on Ralph's posting of July 23?  I see the hepatologist on Tuesday and the hematologist on Thursday.  I still feel great.  I will post the results.  Thanks so much!
683231 tn?1467323017
Hi Aubrey

I am not Hector obviously but I did find this I though twould be helpful


The Reversibility of Cirrhosis


Here, we reviewed the available evidence for the potential reversibility of cirrhosis in various types of liver disorders. In summary, we emphasise the following points:

    Currently, the most reliable strategy for reversal of cirrhosis is the treatment of the underlying aetiology. However, treatment of the underlying cause is not feasible in all the patients with cirrhosis.

    Reversal of human cirrhosis is probably a slow process and may take several years.

    Not all patients with cirrhosis have a reversible disease. Patients with cirrhosis can be categorised into different stages. Patients in the earlier stages of cirrhosis are more likely to witness the reversal of cirrhosis. Although the point at which cirrhosis is irreversible is not established, it appears that cirrhosis becomes irreversible once septal neovascularisation happens and portal pressure increases significantly.

and also from the same article

Clinical Evidence of Reversibility

Regarding alcoholic cirrhosis, achieving and maintaining abstinence has led to significant regression of fibrosis and possibly early cirrhosis.[76] In a retrospective French study, complete abstinence from alcohol for at least 6 months was associated with regression of cirrhosis in 8% of patients.

I also have cirrhosis diagnosed in Jan 2008 mine is from Hep c I recentk\ly treated an tomorrow will be tested at 12 week after I finished treatment to see if I am hep C free and also have an oportunity for my liver to possibly heal with time

There is hope believe it
Good Luck
Avatar universal
Thank you so much Lynn!   I have to stay positive.  Even when I am told there is no chance, I can't have a negative outlook.  Thearticles look very helpful.  I really feel great, mentally, physically, emotionally, spiritually.  I want to stay this way as long as possible.  It feels so good right now.  I read your quotes from the articles and will look them up to read the whole thing now.  I am very lucky, my husband is a great supporter of my newly adopted health, alcohol free lifestyle.  He has joined me in my lifestyle changes.  We are trying to live every day with gusto!  I will post back after this week's doctor apoointments.  Thank you again!
Avatar universal
Aubrey.   Just want say Congragulations for deciding to change your life.  Only good things can happen from here on out.
Please keep us posted
Avatar universal
Hello! Mi had a good week.  My labs are still great, platelets almost normal.  Visit with gastro liver specialist was encouraging.  They all commented how much better I look form six weeks ago.  I have a copy of my liver biopsy.  Pretty straight forward.  I asked about my meld score.  Six weeks ago it was 16.  Tuesday they recalculated it at 11.  The PA talked to me forquite awhile.   She said everything was going in the right direction and if I continue alcohol free and keep a natural, low sodium diet I should be able to stabilize my cirrhosis, if not begin to reverse it.

I do have a question for the forum.  The liver doc wants to do an endoscopy to check on PHT and varices soon.  He explained using a beta blocker or banding if worrisome varices are present.  My cardiologist feels I should wait three months and just switch from the current beta blocker I am on to one preferred for PHT.  I am feeling great and still have ITP and an idiopathic condition where when I have an infection, my kidneys fail, my labs go nuts, etc.  She felt it wasn't a good time to take the possible risk of infection an upper GI poses.   I saw the hematologist yesterday.  She agreed my recovery is strong right now.  Cut the prednisone to 10 for the next week.  Said barring  complications, I should be off steroids for my platelet condition in six weeks.  She agreed that I could avoid the endoscopy for six weeks and then we could reevaluate depending on if my great labs hold up.

I understand how serious varices are.  I just feel an upper GI is a risk and I feel like I am going looking for a problem when I appear to be healthy, feeling great and problem free right now.  Or maybe I am just afraid of what the scope will reveal?  I would love thoughts from fellow cirrhosis sufferers.

Avatar universal
And continue PT and exercise as tolerated daily....
Avatar universal
What does banding entail Ralph?  What are the signs of a bleed out? Coughing up blood?  How does it happen?  Thanks!
Avatar universal
hi Aubrey40

the scarred liver causes blood flow problems, veins start to swell up and if they swell enough they burst. sometimes its a small vein and you might notice black stools and not much else. sometimes its a large vein and heavy bleeding occurs and fills the stomach and then its vomited up,people can be bleeding heavily from both ends.  if heavy bleeding occurs its a medical emergency for sure, because usually a poor liver leads to thinner than normal blood and veins don't stop bleeding easily if burst.

The banding is literally placing bands around the veins, after a while they drop off I think.

Im not sure if you are from the UK, but a well known Politian called Charles Kennedy died recently because of such a bleed.  He never stopped drinking, keep in mind the people who keep on drinking and don't see their doctors regularly are at a big risk from these sort of events.  If you stick with your new life style and keep on top of things you should be fine for years yet.  Stay on top of it.
Avatar universal
Thanks Ralph.  It helps me to have knowledge.  I live in Nebraska, the center of the country, USA.  I have a question about vitamin supplements also.  In the literature my liver doc gave me, it mentioned adding supplements of vitamins A, D, K and Thiamine.  I bought Centram Silver and also Vitamin D and K as the Centram didn't have 100% of the daily allowance.

I have now read some posts saying extra vitamins are bad for a cirrhotic liver.   Who is right? Ni have six more weeks of labs once a week, so will let the clinic know I have started supplements.  I think I will post this question as a new question on this forum also.
Avatar universal
You need to get the scope, as many said its not pleasant but it can be life saving. My husband has cirrhosis stage 4 caused from hep c from a blood transfusion back in the late 80s.

We had no idea or really any signs of any complications. We found out about it all when he went in for a minor umbilical hernia surgery. My husband has always been healthy looking and feeling, when u look at him u wouldn't be able to tell his liver is that bad aside from mild acites in the abdomen.

My point is he didn't feel bad or look bad either but had the scope done and had 8 bands put on. They were so enlarged they were oozing blood just a little if they had burst I've heard its a 50/50 survival chance. We have to go every 3 weeks right now until dr has most banded and then or will be every 6 months.
Avatar universal
Wow, so sorry to hear about your husband.   That is scary.  Do they do the banding at the same time as the endoscopy?  What exactly is banding?  What does it entail?  I just tend to prepare for the worst and work myself up into a full blown anxiety attack....    :(.   Thanks so much for your response.
683231 tn?1467323017

Endoscopic variceal banding (or ligation)

During variceal banding, a doctor uses an endoscope to place an elastic ring that looks like a rubber band around an enlarged vein. Banding the vein in this manner will cut off blood flow through the vein. It may be difficult to use this procedure while someone is actively bleeding, because the device used to place the bands obscures the doctor's vision.

Variceal banding is often done several times to control the varices and prevent bleeding. For example, banding might be repeated every 2 to 4 weeks for 3 to 4 sessions. Your doctor will monitor (check) the varices every 3 to 12 months after that for the rest of your life.

I had banding done I had an upper EGD once a month for 4 months to eradicate all the varicies.

I was checked again at 6 months and now every year so far no reoccurance since 2012

Good luck
Avatar universal
Lynn that's so good to hear you've been able to manage your varicies. Gives me hope that my husband can do the same. Do you remember an average number they banded each time?  My husband has had as many as 8 at one time but usually it's 6-7
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