Aa
Stage 4 Cirrhosis - Any ideas on mortality?
Hello. I have been sick on and off since having pneumonia in September of 2024. I have been hospitalized several times since for numerous problems, platelet disorder, kidney failure, liver failure. I am female and 58. Lone time wine drinker. I have had extensive workups and my final diagnosis after my last nightmare, two week hospital stay was idiopathic organ failure possibly dupe to infection, sensitivity to many antibiotics and stage four cirrhosis, confirmed by a liver biopsy. I have completely changed my lifestyle, no drinking and a completely natural diet with lean proteins. My last visits with my hematologist and my liver specialist were pretty bleak. I was told I would just get worse until I die, basically. My PCP is great, closely monitoring me and is also my cheerleader. I have lost 75 pounds. I am on 20 mg of prednisone for my platelet disorder, to be completely off in 4 to 6 weeks and 80/40 morning and evening dose of Lasix. I now feel great, much energy, positive thoughts, counseling and PT for strength and endurance. I have labs done weekly and all my kidney and liver functions, billiruben, creatine, etc., all have been within normal limits the last five weeks. What would you say my mortality is? I was told when I get sick, my organs shut dow. Each time this happens, there is further organ damage. This all happened when I was still drinking. Can a clean, healthy lifestyle make me better? Odds for or against this? I keep seeing that stage four is end stage. But with perfect labs, can I stop the progression? Heal my liver at all? Again, I feel wonderful. Optimistic, never have had any pain, great labs. Thank you for any help or direction you can give me. I want to hope, but want to be honest with myself too.
I'd listen to your both your cardiologist and hematologist, you can wait. You are not likely to have a bleed out event, given that you haven't had any other previous indications that GI bleeding was even an issue. Also, any significant varices will show up in any of the CT or MRI imaging studies that have been done. I'm sure they would have mentioned these, if they had seen them.
But at some point you will need to get it done. So in the mean time, just be sure not to strain/stress yourself - that means doing anything that will raise your blood pressure to a high degree. I assume your doctors have mentioned that this is generally a no-no for cirrhotic patients. But don't let this stop you from doing what you've already been doing, wrt your exercise, just do it with care.
As you are aware, the GI bleeding that the doctors are worried about is caused by portal hypertension (PHT). They will likely want to start you on beta-blockers to control your blood pressure and heart rate. The problem is that your portal blood system is just a small portion of your overall circulatory system. So controlling it without any unwanted side-effects is very difficult. However, PHT will cause ascites and an enlarged spleen, and you don't have either of those, so there aren't any obvious symptoms that would indicate that you do have "clinically significant" PHT. All cirrhotic's have PHT, it just depends on the degree, but varices are generally not an issue until your hepatic vein/portal pressure gradient gets above 12 mmHg HVPG (but doctors rarely measure this, too risky).
Your platelet count is only mildly low, so it will be very informative to see what your level becomes once the prednisone is cut. Also, keep in mind that the liver is the major source of thrombopoietin which controls the production of platelets. So waiting to see if the prednisone reduction helps the platelets may or may not be productive, it's all pretty complex.
In regards to your liver biopsy, there are several things that the pathologist may have mentioned that maybe of help. From your original message, you said that the diagnosis is stage-4 cirrhosis. But this is a very generalized number, did they also include a grade as well? And the details are very important, did they discuss any architectural changes within your lobules? Also, any discussion about how well-preserved your central hepatic veins are? Any mention of a portal tract form of injury? The reason I ask is that these are clues wrt the actual progression that your cirrhosis has achieved.
But at some point you will need to get it done. So in the mean time, just be sure not to strain/stress yourself - that means doing anything that will raise your blood pressure to a high degree. I assume your doctors have mentioned that this is generally a no-no for cirrhotic patients. But don't let this stop you from doing what you've already been doing, wrt your exercise, just do it with care.
As you are aware, the GI bleeding that the doctors are worried about is caused by portal hypertension (PHT). They will likely want to start you on beta-blockers to control your blood pressure and heart rate. The problem is that your portal blood system is just a small portion of your overall circulatory system. So controlling it without any unwanted side-effects is very difficult. However, PHT will cause ascites and an enlarged spleen, and you don't have either of those, so there aren't any obvious symptoms that would indicate that you do have "clinically significant" PHT. All cirrhotic's have PHT, it just depends on the degree, but varices are generally not an issue until your hepatic vein/portal pressure gradient gets above 12 mmHg HVPG (but doctors rarely measure this, too risky).
Your platelet count is only mildly low, so it will be very informative to see what your level becomes once the prednisone is cut. Also, keep in mind that the liver is the major source of thrombopoietin which controls the production of platelets. So waiting to see if the prednisone reduction helps the platelets may or may not be productive, it's all pretty complex.
In regards to your liver biopsy, there are several things that the pathologist may have mentioned that maybe of help. From your original message, you said that the diagnosis is stage-4 cirrhosis. But this is a very generalized number, did they also include a grade as well? And the details are very important, did they discuss any architectural changes within your lobules? Also, any discussion about how well-preserved your central hepatic veins are? Any mention of a portal tract form of injury? The reason I ask is that these are clues wrt the actual progression that your cirrhosis has achieved.
Hello! My hematologist and my liver specialist appointments went very well. My labs have all been normal. Platelets up to 130,000. I received a copy of my liver biopsy. Fairly straightforward. Asked about my meld score. It is currently 11, down from 16 six weeks ago. The docs seemed very surprised I was doing so well. I don't have symptoms of varices or ascites, but the liver doc wants me to have an upper GI endoscopy right away, just to be sure one way or the other. My cardiologist wants me to wait 2 or 3 months. Feels they still don't know why my organs shut down when I get an infection, risks of infection with this procedure and short time, six weeks, I have been out of the hospital and feeling really good. The hematologist wants to watch my labs weekly for six more weeks, get me completely off prednisone, and keep an eye on my platelets, then talk about an upper GI. Three different opinions from each doctor. I am going to go with watching labs weekly for six weeks. Your thoughts? Thank you!
Thank you so much. I have followups with the hematologist and liver specialist at the end of this month. The doom and gloom doctors... You have given me many questions to ask. I will post back after my appointments. I am very grateful for your input and these forums!
There really isn't anyway for your doctors to be exactly sure what stage of fibrotic damage exists within your liver. Even when using biopsies, sampling such a small portion of a very large liver allows for some error in
whether that sample is truly representative of the whole. In addition, architectural changes are even harder to quantify, but this is a very crucial part in assessing the disease severity. Also, if you have any questions about the contents of your biopsy/pathology report, we maybe able to help clarify things for you.
In alcoholic cirrhosis, the liver parenchyma not only has fibrotic islands that surround hepatocytes, there is a fatty (steatotic) component along with inflammation/necrosis and hepatocellular regeneration that causes compressive stress in the liver. This is one of the reasons why ALD patients can rebound to a much healthier state relatively quickly, after the insults from the alcohol is stopped. In addition, how much the testing data reflects the damage from either the stage, or from the grade, makes it very difficult for doctors in being able to tell which of their patients will recover and which won't.
So yes, you may very well become a success story, let's hope so! Especially given your aggressive commitment towards your healthy lifestyle changes already. Stage-4 can be a very fuzzy threshold and no doctor will be able to tell you exactly which side of the threshold you stand. Of course doctors will be able to tell apart those who are dealing with well-developed, advanced cirrhosis. But these patients will not have the normal numbers that you are currently seeing. I'm surprised your doctor(s) are so negative, given your great numbers.
The main number that you should note is your MELD score (Model for End-stage Liver Disease). However, keep in mind that using a single number for such a complex disease process is obviously a bit uncertain. And the MELD score may completely miss what's truly important, for a given patient's situation. My MELD is always quite low, but yet I have several serious decompensation symptoms. Your doctor's will have to consider your case based on it's own particular metrics, we're all very different. Here's a link for more information:
http://www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-model-unos-modification
You mention that your platelets are low. This maybe due to your liver disease, or it maybe due to your other health-related issues. If you have developed portal hypertension, PHT, impeded portal blood flow caused by internal resistance within your liver due to the fibrosis and compression. This can cause your spleen to enlarge, formation of ascites with peripheral edema and GI bleeding (via varices). The enlarged spleen in combination with a decreased liver synthesis function can lead to low platelet levels. But again, this is very complicated in assessing, so you need have a good liver specialist involved. For example, I have PHT and my spleen is the size of a football, but my platelets are normal, and have even been at the upper limit of normal. A very strange and complicated disease, so make sure you're happy and confident with your liver doctor specialist.
We're here you help out in anyway we can, take care.
whether that sample is truly representative of the whole. In addition, architectural changes are even harder to quantify, but this is a very crucial part in assessing the disease severity. Also, if you have any questions about the contents of your biopsy/pathology report, we maybe able to help clarify things for you.
In alcoholic cirrhosis, the liver parenchyma not only has fibrotic islands that surround hepatocytes, there is a fatty (steatotic) component along with inflammation/necrosis and hepatocellular regeneration that causes compressive stress in the liver. This is one of the reasons why ALD patients can rebound to a much healthier state relatively quickly, after the insults from the alcohol is stopped. In addition, how much the testing data reflects the damage from either the stage, or from the grade, makes it very difficult for doctors in being able to tell which of their patients will recover and which won't.
So yes, you may very well become a success story, let's hope so! Especially given your aggressive commitment towards your healthy lifestyle changes already. Stage-4 can be a very fuzzy threshold and no doctor will be able to tell you exactly which side of the threshold you stand. Of course doctors will be able to tell apart those who are dealing with well-developed, advanced cirrhosis. But these patients will not have the normal numbers that you are currently seeing. I'm surprised your doctor(s) are so negative, given your great numbers.
The main number that you should note is your MELD score (Model for End-stage Liver Disease). However, keep in mind that using a single number for such a complex disease process is obviously a bit uncertain. And the MELD score may completely miss what's truly important, for a given patient's situation. My MELD is always quite low, but yet I have several serious decompensation symptoms. Your doctor's will have to consider your case based on it's own particular metrics, we're all very different. Here's a link for more information:
http://www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-model-unos-modification
You mention that your platelets are low. This maybe due to your liver disease, or it maybe due to your other health-related issues. If you have developed portal hypertension, PHT, impeded portal blood flow caused by internal resistance within your liver due to the fibrosis and compression. This can cause your spleen to enlarge, formation of ascites with peripheral edema and GI bleeding (via varices). The enlarged spleen in combination with a decreased liver synthesis function can lead to low platelet levels. But again, this is very complicated in assessing, so you need have a good liver specialist involved. For example, I have PHT and my spleen is the size of a football, but my platelets are normal, and have even been at the upper limit of normal. A very strange and complicated disease, so make sure you're happy and confident with your liver doctor specialist.
We're here you help out in anyway we can, take care.
Have an Answer?
You are reading content posted in the Liver Disorders Community
Learn which OTC medications can help relieve your digestive troubles.
Is a gluten-free diet right for you?
Discover common causes of and remedies for heartburn.
This common yet mysterious bowel condition plagues millions of Americans
Don't get burned again. Banish nighttime heartburn with these quick tips
Get answers to your top questions about this pervasive digestive problem
