I Have 4th stage cirrhosis compensated and is there hope?

[CentralP]

Hi, I have 4th stage cirrhosis that fortunately is compensated. I am 51 years of age soon to be 52 and am being checked on every 6 mos with Ultrasounds and Doctors Visits. I did have hep c but licked it due to the newer treatment so a Win is a Win! But now this and I am not out of the woods yet. I am clean and sober and have been for years but is there hope for me? At this point I do not seem to get a clear answer from the Doctors and I can't blame them as they do not have a crystal ball. If there is one thing that I think is going to impact my disease is my diet. It is not the best as I still enjoy my tacos and refried beans. Also my job takes me out on the road and I tend to go overboard on the food since I am expensed I.E. I was out on the road this pass week and my side slightly aches. I wonder if it is from my diet? When I am not on the road I tend to be more disciplined. Bottom line short, can I live a normal life with this and can it be reversed. Also will diet effect my situation? I do go to the gym 3-5 times a week. Again I do not drink or drugs anymore and Thankfully I am out of its power! Any feedback would be much appreciated! Thank You!

[Sobermichael5]

I have stage 3 cirrhosis and have been cured of HepC. I was told my sodium intake should be limited to under 2,000mgs a day, very little fried food(as to not develop fatty liver. I've found no restaurant has niether on their menu except maybe dessert!!i find the nutritional information of most restaurants are online on their websites. Fast foods being the worst.

[hepcandme]

Fast food is the worst and it doesn't even taste like food! I don't add salt when I am cooking but when I go out, I eat the salt that the chef has added and, so far, no ill effects. After awhile of not eating salt much, you become keenly aware when there is too much salt in something. But everyone is different. I no longer have Hep C but I am still cirrhotic

[Sobermichael5]

I have stage 3 cirrhosis and have been cured of HepC. I was told my sodium intake should be limited to under 2,000mgs a day, very little fried food(as to not develop fatty liver. I've found no restaurant has niether on their menu except maybe dessert!!i find the nutritional information of most restaurants are online on their websites. Fast foods being the worst.

[rexx73]

Hi Lyn,
thanks for your reply.
The Doc's first thought it's sibo(small
intestinal bacterial overgrowt) then they said it could be Psychosomatic but none of these are true.
So i am waiting for my MELD goes up for put on thet transplant list.there is nothing more I could do.I wish I could.
Marc

[flyinlynn]

Hi Marc

From what I have read the fibroscan test is not that accurate at mid range results but if it says you have cirrhosis then you have cirrhosis. I had a fibroscan done in Oct 2014 in case my insurance wanted something more recent than my F4 cirrhosis from my biopsy in Jan 2008. My fibroscan was 27.

Maybe you could ask to have a liver biopsy while not perfect it is still considered the gold standard in assessing the condition of the liver.

Most of those symptoms do not sound like cirrhosis at least not to me anyway.

One of the most common first symptoms is lower leg swelling called edema. I developed edema back in the summer of 08 the same year I was diagnosed with cirrhosis.

I also have a low platelet count around 90 with 150 the minimum normal. A low platelet count is also a common early symptom of cirrhosis. This happens because cirrhosis causes the spleen to enlarge and when it does the spleen sequesters the platelets taking them out of circulation in the blood stream.

Have your doctors investigated possible other causes for your symptoms?

Sorry you are having so many health challenges. I hope your doctors can figure out how to help you find relief from your symptoms.

[flyinlynn]

Hi rexx

What does your liver specialist say? Do you have cirrhosis? How are your ultrasounds?

What kind of symptoms do you have?

Lynn

[rexx73]

Hi Lynn,
my Docs are not sure i have Cirrhosis.But iam.
My US is always normal,but my Fibroscans fluctuate from 5 to 14 kpa,so i dont believe the fibroscan as i feel more and more ill.
Means nausea,pain everywhere(muscle and bone),stabing Pain under the right Ribcage,Muscle Twitches,Sleepless,Weakness and 100 More.I just feel constant sicker and sicker.
Marc

[rexx73]

Iam now 3 years SVR,but I feel more and more sick.
My meld score in the last 3 years is always between 6 and 9.it goes up and down.

[flyinlynn]

Good to know the possibilities are better than I thought

I just was assuming it takes years for cirrhosis to develop so it would take years to undo the damage

Thanks

[flyinlynn]

Hi Rexx

How long ago did you cure hep c? It takes decades to progress so one could assume that if and when our livers improve it could take decades to reverse cirrhosis if it happens.

[HectorSF]

It typically takes years, not decades, for the liver to repair itself after being cirrhotic and the  underlying of the disease is removed. This is typically seen in the case of curing the hepatitis C virus in cirrhotics. The improvement in the liver disease can be seen granularly on FibroScan scores over time.

The liver doesn't need to have no fibrosis (stage 0 liver disease) to be fully functional. Any stage less than stage 4 cirrhosis is an improvement.

Of course the increased risk of developing liver cancer (HCC) still may exist as long once one has had cirrhosis. Studies are being done to clarify the exact risk. For now all people who have had cirrhosis are at increased risk of developing liver cancer and require HCC surveillance.

Hector

[flyinlynn]

Hi
I had liver biopsies every 5 years after I was diagnosed with hep c.

I started with F1 in 1993 then F2 in 1998, F3 in 2003 then in Jan 2008 I was F4 and diagnosed with cirrhosis there is only F4 cirrhosis F1,@,& # are only increasing degrees of scaring culminating with F4 cirrhosis.

I am a child "A" Meld score 8 cirrhotic. I am still considered to be compensated even though I have had esophageal varicies that required banding back in 2012 and have a small amount of ascities and edema.

I have a terrible diet as I don't cook so egg mcmuffins in the AM lunch at the work cafeteria and cereal for dinner is pretty much my diet or TV dinners like Healthy choice I try to read nutrition labels for sodium content and I take a multivitamin without iron

That's about it

Lynn

[CentralP]

Got it!

[HectorSF]

Congratulations on having cured your hep C. That is a huge step to giving your liver a chance to repair the damage that has been done to your liver over the past decades of infection.

Since you still have cirrhosis you need to continue to stay away from anything that can cause further damage to your already badly damaged liver. Alcohol especially. You need to give your liver time to heal.

You are still at risk for developing liver cancer (Hepatocellular Carcinoma) because you had and still have cirrhosis. The risk now is less than when you had active hep C, but it is still a higher than normal risk as in people who have never had cirrhosis. So you will need to continue to have cancer surveillance (ultrasound and possibly an AFP blood test) every 6 months for years to come. At this time we still done know how many years surveillance needs to be continued. So for now at least the foreseeable future. Like most cancers HCC has no symptoms in its early stages so only monitoring can catch it when it is in its early and curable stages.

Since you mention your diet so much, have you been diagnosed with fatty liver disease? Has your liver doctor done testing for fatty liver disease? This is very important to know.

If you have been diagnosed with fatty liver disease you really need to watch your diet because fatty liver disease can also cause your liver disease to get even worse despite having cured your hepatitis C and in time can lead to liver failure.

As you know there are many causes of liver disease not just hep C. in addition to hepatitis C, other common causes are alcoholic liver disease and fatty liver disease are but a few. Fatty liver disease is now the fastest growing cause for liver transplant and in the coming years is expected to overtake hepatitis C as the number one cause for liver transplantation. You should talk to your liver to learn if you have fatty liver disease in addition to having had hepatitis C.

If fatty liver disease is not an issue for you then by abstaining from alcohol and drugs and having cured your hep C, your liver should be able to reverse your early cirrhosis. It may take many years, but over time your liver will heal.

Hopefully you cured your hep C in time so you won't have to suffer the effects of  liver failure (ascites, variceal bleeds, HE, etc.) and the need for a liver transplant.
Take care of your liver and your liver will take care of you.

Be well.
Hector

[CentralP]

Thank you Hector. I do not know if I have fatty liver disease for certain and I will have to find out. I go back to VA in June I believe it is.

[HectorSF]

Good luck with your VA visit in June!
Hector

[CentralP]

Hector, I had an ultrasound done and the Doctor phoned me stating that there was a spot found on my liver. He states most likely nothing to be concerned about and that it is fat sparing due to fatty liver. Now I am worried as he has ordered a mri. I do this in July. I don't know what to think as I am leaving on vacation and asking my Better Half to Marry Me.

[rexx73]

Unfortunately not all do have regression of Cirrhosis,i am one example.

[hepcandme]

Apologies for the long post but Hector's advice was so good and my docs have not said a peep about What Next so I keep this post at hand and hope that our livers will improve now that we are battling Hep C.

And no drinking ever again. Guess that goes without saying

~ Linda

[hepcandme]

This boat is full!

I am Hep C free but still cirrhotic
My labs seem to get better and better though

Diet is very important even if you did not have liver disease. I rarely eat meat. Never red meat, I try to get lots of fresh fruit and veggies and eat mostly eggs, fish and nuts and lots of peanut butter

I've noticed that for any disease, the prognosis is much better if one is slim. The good news, at least for me, is that I don't gain weight even if I eat a big piece of cheesecake or 6 cookies - though I'm certain that the sugar isn't good. Still, you can't give up everything! And since you are not consuming empty calories, you get some leeway

I can't find the post so I'm going to share Hector's response in its entirety re: What next for people who have achieved SVR

Congrats on your SVR.

The only treatment for cirrhosis of the liver (or any stage of liver disease for that matter) is to treat the underlying cause of the liver injury to prevent further injury to the liver. This you have done by curing your chronic hepatitis C infection.

Unfortunately the damage that has already been done over the decades of infection remains. Typically it takes many years for the liver to repair itself after the ongoing damage has been stopped.

While there are no specific treatments for the complications of cirrhosis such as portal hypertension, portal hypertension as well as many other complications of cirrhosis, bleeding varices, ascites typically become no longer possible life-threatening complications after SVR in all but the very sickest patients with decompensated cirrhosis and these patients will continue to require a liver transplant to recover their health.

Now that more and more people for the first time in recent years are able to cure their hepatitis C with cirrhosis, in the next few years we should know much more about how the cirrhotic liver heals itself over time after SVR.

For all the latest and current medical information for the diagnosis, treatment and care for people who have or have had chronic hepatitis C we have The AASLD/IDSA  “HCV Guidance: Recommendations for Testing, Managing, and Treating Hepatitis C” available to all online.
http://hcvguidelines.org/full-report-view

Here are the latest recommendations for all providers for patients who have treated and cured their hepatitis C infection.
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*** Monitoring Patients Who Have Completed Treatment ***

Patients who have undetectable HCV RNA in the serum, when assessed by a sensitive polymerase chain reaction (PCR) assay, 12 or more weeks after completing treatment, are deemed to have achieved an SVR. In these patients, HCV-related liver injury stops, although the patients remain at risk for non–HCV-related liver disease, such as fatty liver disease or alcoholic liver disease. Patients with cirrhosis remain at risk for developing hepatocellular carcinoma.

Recommended follow-up for patients who achieve a sustained virologic response (SVR).

* For patients who do not have advanced fibrosis (ie, those with Metavir stage F0-F2), recommended follow-up is the same as if they were never infected with HCV.

* Assessment for HCV recurrence or reinfection is recommended only if the patient has ongoing risk for HCV infection or otherwise unexplained hepatic dysfunction develops. In such cases, a quantitative HCV RNA assay rather than an anti-HCV serology test is recommended to test for HCV recurrence or reinfection.

*** Surveillance for hepatocellular carcinoma with twice-yearly ultrasound testing is recommended for patients with advanced fibrosis (ie, Metavir stage F3 or F4) who achieve an SVR.

* A baseline endoscopy is recommended to screen for varices if cirrhosis is present. Patients in whom varices are found should be treated and followed up as indicated.

* Assessment of other causes of liver disease is recommended for patients who develop persistently abnormal liver tests after achieving an SVR.

Among patients with advanced liver fibrosis (ie, Metavir stage F3 or F4) who achieve an SVR, decompensated liver disease (with the exception of hepatocellular carcinoma) rarely develops during follow-up, and overall survival is prolonged. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010)

Patients who have advanced fibrosis or cirrhosis continue to be at risk for development of hepatocellular carcinoma after achieving an SVR, although the risk in these patients is lower than the risk in persistently viremic patients. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010)

Patients with cirrhosis who achieve SVR experience increased survival (compared with patients with cirrhosis who are untreated or in whom treatment fails), but still may be at some risk for hepatocellular carcinoma; thus, they should continue to undergo regular surveillance for hepatocellular carcinoma despite the lowered risk that results after viral eradication. (Bruix, 2011) The risk of hepatocellular carcinoma among patients with advanced fibrosis prior to treatment but who have regression to minimal fibrosis after treatment is not known. In the absence of data to the contrary, such patients remain at some risk for hepatocellular carcinoma and should be monitored at regular intervals for hepatocellular carcinoma.

Liver fibrosis and liver function test results improve in most patients who achieve an SVR. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Bleeding from esophageal varices is rare after an SVR. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Patients with cirrhosis should receive routine surveillance endoscopy for detection of esophageal varices if not previously done and these should be treated or followed up as indicated. (Garcia-Tsao, 2007)

Patients in whom an SVR is achieved but who have another potential cause of liver disease (eg, excessive alcohol use, metabolic syndrome with or without proven fatty liver disease, or iron overload) remain at risk for progression of fibrosis. It is recommended that such patients be educated about the risk of liver disease and monitored for liver disease progression with periodic physical examinations, blood tests, and potentially, tests of liver fibrosis by a liver disease specialist.

Periodically testing patients with ongoing risk for HCV infection (eg, illicit drug use, high-risk sexual exposure) for HCV reinfection is recommended. Flares in liver enzyme test results should prompt evaluation of possible de novo reinfection with HCV through a new exposure (see Management of Acute HCV Infection). Antibody to HCV (anti-HCV) remains positive in most patients following an SVR. Thus, testing for reinfection with HCV is recommended and should be performed with an assay that detects HCV RNA (eg, a quantitative HCV RNA test).
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Remember to continue to have regular surveillance (ultrasound + AFP blood test) for hepatocellular carcinoma (HCC), ie liver cancer, as having had cirrhosis due to hepatitis C means you still have a increased risk of developing HCC despite being cured of the virus.

[CentralP]

Thank you!

[flyinlynn]

Hi
I am in the same boat as you. I had hep c for 37 years and was DX with cirrhosis 8 years ago.

From what I have read we should not get any worse as the cause of our liver damage hep c is gone. Of course we will still need to be careful no drinking and caution with meds. We will need to be monitored probably for life for early signs of liver cancer HCC with abdominal ultrasounds and AFP blood testing as we are at increased risk for HCC but by curing hep c that risk is significantly reduced.

There is also some evidence our lives may improve with time but for us as individual patients only time will tell.

If you haven't already get vaccinated against hep a and b and we should also get the pneumonia vaccine and get our flu shots every year. If you haven't already been checked you should also have an upper endoscopy to check for esophageal varicies.

But from my understanding unless we get HCC with care we can anticipate living a normal life span and probably die from something other than liver disease

Good luck
Lynn

[CentralP]

Hi Lynn, so good to hear from you again! Question, is it 4th stage you were diagnosed with 8 years ago and did you say yours was decompensated? What about diet. I love to eat!