Ask the Expert: I Have Cirrhosis…What Should I Expect?

Ask the Expert: I Have Cirrhosis…What Should I Expect?

The Center for Disease Control and Prevention (CDC) estimates out of every 100 people who are infected with hepatitis, between five and 20 of those will develop cirrhosis over a period of 20 to 30 years. We asked our expert, Sue, what is cirrhosis and what should people expect, and here’s what she had to say:

Sue’s Response:

SueSimonCirrhosis is a chronic degenerative disease in which normal liver cells are damaged and are replaced by scar tissue (fibrosis). It has many causes including hepatitis C virus. Cirrhosis in hepatitis C patients is considered stage 4 disease. The scar tissue alters the flow of blood as well as bile through the liver. The consequences of cirrhosis can be life threatening. The longer the patient has hepatitis C, the greater the chance that cirrhosis will occur.

When cirrhosis occurs the blood vessels in the liver narrow which forces blood to back up and cause portal hypertension. Patients in the early stage of cirrhosis (compensated) may have the following symptoms: fatigue, lack of stamina, weight loss, lack of appetite, and spider angiomas which look like little red spider veins on the skin. In compensated cirrhosis the liver is still able to adequately function. Once the cirrhosis becomes decompensated, the patient may develop ascites, jaundice, itching and easy bruising. In later stages of cirrhosis, this process may cause veins to become enlarged in the esophagus (varices) and abdomen. Bilirubin also backs up and the patient may become jaundiced. Ascites occurs when fluids leak out of the blood vessels in the abdomen and the stomach swells. A patient with varices is in danger of having a major bleed and they must be treated immediately to stop the bleeding. Fluid in the abdomen causes rapid weight gain. Physicians can drain the fluid and medicate the patient to help relieve fluid buildup and prevent infection. Inflammation of the lining of the abdomen is a consequence of ascites and is called spontaneous bacterial peritonitis. It is a life-threatening infection of the fluids. Edema in the feet and legs is a common finding in cirrhotic patients. When the patient starts to decompensate they should be evaluated by a liver transplant team as the only cure for cirrhosis is a liver transplant.

Patients with cirrhosis are at risk to develop hepatocellular carcinoma (HCC). They need to be monitored every six months with an alfa fetoprotein test and an ultrasound, MRI or CT scan. At this point there are no cures besides transplant for HCC or cirrhosis although new drugs are being tested to help treat HCC and anti-fibrotics are being investigated.

As you can see, cirrhosis is not a good thing to have. If you have hepatitis C, there are things you can do to protect yourself and slow the progression of the virus. Keep your doctor appointments and make sure he/she knows about your symptoms. Ask about your treatment options and get vaccinated for hepatitis A and B. Most important of all, do NOT drink alcohol. My personal experience with my cirrhosis diagnosis started with my first liver biopsy in 1991. I had contracted hepatitis C in 1966 so had the virus for 25 years before diagnosis. My main symptom was serious fatigue and lack of stamina. I treated with interferon and ribavirin many times but never cleared the virus. I entered a clinical trial in 2012 and had a sustained viral response……a cure! I tried my best to take care of myself after I was diagnosed. I stopped drinking socially immediately. I stopped smoking a few years later. I never missed a doctor appointment and I tried treatment every time a new interferon was approved. I tried to make healthy lifestyle choices. I am telling you this so that you know that even with a diagnosis of cirrhosis, you very well may do just fine. I wish you well.

Comments

View Comments (8)
  • Kathy D
    2 years ago

    What gets me is now the Doctors call Cirrhosis F-4 with no mention of Grade. I was diagnosed with Stage 4, Grade 1 in 2004. Would I be F4A? The LFT’s back in 2004 was up in the 200’s and now I’m in the teens and low 20’s. Cured in December 2005. AST/ALT
    Copied from hepatitiscnewdrugresearch.com/staging-cirrhosis.html
    Hepatitis has 4 stages. Stage 4 Hepatitis = Cirrhosis.
    Then-
    There’s 3 stages of Cirrhosis:
    Stage A (“compensated”; not too sick)
    Stage B (beginning to decompensate; complications beginning to appear)
    Stage C (“decompensated”; end stage)

  • bbrennerxx
    2 years ago

    OK I have known I had Cirrhosis for some time, then there is HepC I had to have gotten in my late 20’s in which I am 50 now. A couple years back I did the interferon ribaviran and another pill and it seemed to have made the HepC go away but I kept getting tested and after about 2 years it came back plus doing something very stupid by drinking a lot of alcohol which about a week later a vein broke open and filled my stomach with blood and then went straight to my brain so there was a month in the hospital. Keeping in contact with my doctor a gastroenterologist we decided to wait then there is Harvoni and I am in about 8 weeks of a 24 week cycle I dont know what to expect. I was told I had varicies among a few other problems.
    If you can can you point me in a direction of someone to talk to for I really don’t know what to expect, I am trying to do my body good but diabetes and obesity does not help. Plus my memory seems to be going is it old age, or wear and tear I put my body through or my liver

  • CaseyH moderator
    1 year ago

    Hi @highmaintenance! I’m so sorry to hear you’ve had to endure so much, but the progress you’re making now sounds AMAZING! Yay!! So glad to hear that things are going well now, and that the new liver is recovering!! Please keep us posted on everything! We’re here for you, and are so grateful for your positive attitude! -Casey, HepatitisC.net Team

  • highmaintenance
    1 year ago

    ps: I did get a transplant on Nov 12th 2009. Hep c was quick to attack my “new” liver for a good five years and have chirrious on a 40% scarring. Since my Harvoni treatments I am gaining back somehow, & my liver function is improving as much as 15% or more. My liver donor was a 781/2 yr old female, that would make it close to 841/2 years old. It’s documented and is amazing.

  • highmaintenance
    1 year ago

    We have a lot in common, I believe. In Your story talking about the interferon/ribvarin combo treatment I can relate how stress from just the side effects. I took the interferon for 361/2 weeks or about 71/2 months. I hade NO response at all & had many problems from the drug that still effect me today. That’s another story LoL
    I’m so glad to here that you stuck with it & the Harvoni is gonna kick butt on that virus. I was fortunate to get into a trial research from Gilliad for the 24 weeks, the longest they treat I believe. My viral response was quick & my SVR kept getting lower & lower then zero in just a few months. I’ve been zero SVR for almost two years now. Good luck in your journey. Let us know when zero.

  • lauramcknight
    3 years ago

    i cant afford harvoni im 65 diagnosed with hep c 25 yrs ago i malways tired crave sugar leg cramps muscle pain in neck n back does medicare pay for harvoni treatment

  • highmaintenance
    1 year ago

    Wish you well in finding where to get Harvoni. It’s good stuff.

  • Kelly McNamara moderator
    3 years ago

    Hi Laura. I’m so sorry to hear everything you’re going through. Here’s some information about medicare and hep C: https://hepatitisc.net/living/efforts-for-increased-access-to-daas/ and https://hepatitisc.net/answers/expert-answers-medicaid-and-hepatitis-c/ and navigating the insurance authorization process: https://hepatitisc.net/living/navigating-hcv-prior-authorization/. We have a list of resources that can be helpful in navigating the whole process: https://hepatitisc.net/living-with-hep-c/hep-c-resources/. Also, one of our writers put together a list of tips she uses to manage leg cramps: https://hepatitisc.net/living/leg-cramps/. Keep us updated on how you make out. And, the community’s always here if you have any questions along the way. Best wishes, Kelly, Community Manager

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