So something happened, and you were exposed to the Hepatitis C virus (HCV). Maybe you used injectable drugs, even just once. Maybe you had a blood transfusion back before the blood supply could be screened with more sensitive tests to find it (which, by the way, wasn’t until July 1992—three years after HCV was identified as a unique virus). Or maybe you didn’t use a condom when you had sex, and you were especially vulnerable to the infection because you’re HIV positive, and/or because you’re a man with a male partner.
Any of these situations could lead to your contracting HCV, a blood-borne virus that requires your blood coming in contact with the blood of someone who has it in order to develop. Once the infection is in your body, its main target is your liver. It causes damage called fibrosis, or scarring, which can lead to advanced-stage liver disease, also known as cirrhosis (yes, the same outcome that can occur from drinking alcohol).
And here’s the kicker: You can have HCV for decades and not know it. Why? Because you can have few to no symptoms. Called a “silent” infection, the only real way to know you have HCV is to be tested for it. The good news is that while the disease’s damage is progressive over time, it is typically slow-moving. And direct-acting antiviral drugs (DAA) provide a real cure for more than 95% of people treated. So unless you’re re-infected (by all the same risk factors that caused your disease in the first place), you’ll likely never have an issue with the disease again after treatment. And in some cases, your liver can actually work to reverse some of that damage and regenerate.
“Hepatitis C is an eminently treatable disease now with curative therapies,” says Amesh A. Adalja, M.D., a senior scholar at Johns Hopkins Center for Health Security and an internist specializing in infectious diseases and critical care at the University of Pittsburgh Medical Center. “These drugs have transformed [treatment], and HCV is no longer the leading reason for liver transplantation in the U.S.,” he says.
However, being screened for the infection is vital: “As recently as 2016, Hepatitis C was the leading cause of death by a single infectious disease in the U.S.," says Dr. Adalja. "This argues that these cases must be uncovered and treated before irreversible liver damage occurs.” Who should be screened?
- Adults born from 1945 through 1965
- Those who currently inject drugs
- Those who have injected drugs, even if it was just once, years ago
- Those who received clotting factor concentrates before 1987
- Those who were on long-term hemodialysis
- Those who have persistently abnormal alanine aminotransferase levels (ALT)
- If you have HIV
- If you received transfusions or organ transplants, including if you were notified that your received blood from a donor who later tested positive for HCV infection
- If you had transfusion of blood, blood components, or an organ transplant before July 1992
- Those who had possible exposure to HCV through needle sticks, sharps, or mucosal exposures to HCV-positive blood as a healthcare, emergency medical, and public safety worker
- If you’re a child born to an HCV-positive woman
Want to learn more about the stages of the infection, its impact on your liver, and what you need to know about HCV progression? Read on.
Acute Hepatitis C Infection: The First Six Months
If you’re exposed to HCV, you will likely develop the infection. Within days of hitting your blood stream, the Hepatitis C virus gets busy infecting liver cells, which help it replicate, Dr. Adalja explains. The invasion tips off your immune system, which triggers the inflammatory response. Here’s what happens:
After infection, your liver cells begin to die, killed either by the virus itself or your immune system’s response to the infection or both (researchers aren’t sure).
This cell death causes more inflammatory cells to travel to the liver to see what the heck is going on. When they arrive, they order certain fat-storing cells to start churning out collagen. This fibrous protein helps develop scar tissue, which is meant to help stop the spread of infection; it literally tries to wall it off.
Usually, collagen dissolves as damaged tissues heal. Not so in an HCV infection: Collagen continues to slowly build up, leading to scarring, also known as fibrosis, and more liver cells die.
While this is all happening, there’s a very good chance you’ll feel absolutely fine, which is why diagnosis is often delayed. But if this whole immune response does cause symptoms, they’ll likely include:
- Dark urine
- Abdominal pain
- Loss of appetite
- Joint pain
- Clay-colored bowel movements
- Jaundice (yellow color in the skin or eyes)
If you know you’ve been exposed and thus get diagnosed during this acute phase, you’ll likely receive a direct-acting antiviral (DAA) medication, the new treatment for HCV that has an excellent chance of squashing the virus for good. Once it’s out of your body, the inflammatory process stops, and your liver finally has a chance to heal.
“That’s the key thing for patients to know,” says Blaine Hollinger, M.D., a professor of medicine (hepatology), molecular virology and epidemiology, and director of the Eugene B. Casey Hepatitis Research Center at Baylor College of Medicine in Houston. “There are good direct-acting antivirals specific for this virus available that can cure you usually in eight to 12 weeks, and then you don’t have to worry about Hepatitis C anymore.”
These medications work to heal the liver in two ways, he says:
- By stopping the inflammatory process damaging the liver.
- By stopping the progression of the disease to cirrhosis.
The fascinating thing about the acute phase? Something called “spontaneous viral clearance.” This is when HCV suddenly leaves your body, without treatment. It happens in 15-25% of patients (stats differ and could be higher—we’re still not sure how many people have had HCV) during these first six months. We don’t fully understand why this happens for some people, and not others, but it does.
Thus HCV infection can be a short-term illness. But for up to 85% of people who have it, Hepatitis C becomes chronic and requires treatment.
Chronic Hepatitis C Infection
If your body doesn’t win the fight within the first six months, you enter a new phase called chronic HCV. It can literally last decades, and during this time, the virus is continuing to do its dirty work. Patients often don’t have symptoms in this stage either, just like with acute HCV, until liver function is compromised, Dr. Adalja says. (Hence why testing is vital!) Nevertheless, if symptoms do show up, they’ll likely include:
- Ascites (abdominal swelling) leading to abdominal distension from fluid retention
- Dilated veins on the abdomen
- Dark urine
- Hepatic encephalopathy (confusion, drowsiness, and slurred speech, the result of a damaged liver that can’t remove toxins from the blood going to your brain)
Here’s what happens in this phase:
As the inflammatory process continues unabated, the virus starts to evade the immune system. The fibrosis process is no less dangerous to your liver in this stage—it just continues to build. If left unchecked, the damage will continue, very possibly silently and slowly, to advanced liver disease, or cirrhosis.
Once HCV is confirmed (determined through blood tests), the next step is measuring the inflammation and scarring—or fibrosis—in your liver, says Dr. Hollinger. You’ll receive a score from 0 to 4, with 4 indicating the most severe damage.
Then treatment, likely with a DAA, begins. Assuming you achieve “sustained virologic response” (SVR) after 12 weeks (doctor-speak for having no detectable virus in your blood), your fibrosis score will dictate what kind of follow-up you’ll need. If you have no scarring to mild-moderate fibrosis, you likely won’t need liver-specific follow-up. Conversely, if you have advanced scarring, or cirrhosis, you’ll need regular blood work and ultrasounds every six months to monitor for liver cancer, regardless of whether you’ve eliminated the virus from your system.
Even if you’ve had HCV for years, once the virus clears, your liver can begin to break down some of that scar tissue and regenerate, says Tarek Hassanein, M.D., a hepatologist and medical director of UC San Diego Health/Sharp Liver Transplant Outreach Program and the chief of gastroenterology/hepatology at Sharp Coronado Hospital in San Diego.
Sometimes the regeneration process takes years—half a decade, a full decade—but it is possible, Dr. Hollinger notes, as long as the organ is given a chance. That means seriously limiting alcohol (no more than one drink a day for women and two for men) and working to manage other conditions like obesity, high cholesterol, and diabetes, which can cause non-alcoholic fatty liver disease.
“Without treatment or cure, the liver will not regenerate,” says Dr. Hollinger.
Hepatitis C-Related Cirrhosis
When HCV remains active in the body for decades, severe scarring known as cirrhosis may develop. And when we say decades, we mean it: Cirrhosis can take 20 to 50 years to show up. As with lesser stages of liver disease, you might not have symptoms in this stage, either—at least, not until damage is extensive. Treatment remains the same—DAAs. Symptoms can include:
- For women: Absent or loss of periods unrelated to menopause (found in both alcoholic and non-alcoholic chronic liver diseases, and could be caused by hypothalamic‐pituitary dysfunction)
- For men: Loss of sex drive, breast enlargement (gynecomastia), or testicular atrophy (these can occur for different reasons, but seem related to chronic liver disease in general)
- Hepatic encephalopathy
- Fluid in the abdomen (ascites)
- Spider-like blood vessels on the skin
- Redness in the palms of the hands
Cirrhosis happens in about 20-30% of patients who have chronic HCV prior to treatment. The liver’s exposure to the inflammatory response can also (although rarely) lead to liver cancer (called hepatocellular carcinoma) in 1-5% of those with cirrhosis.
Risk factors for faster progression to cirrhosis include:
- Being infected at an older age (40 to 55 years and older)
- Being male
- Higher body mass index
- Presence fatty-liver disease
- Consumption of alcohol
- HIV co-infection
“Once the liver has cirrhosis [or stage 4 fibrosis], the architecture of the liver is disturbed,” says Dr. Hassanein. “We look at the total functionality of the liver cells, and we classify the collective dysfunction of the liver into three levels.”
These three levels are the basis for the Child-Pugh Score, which tests for prognosis (or likely outcome) of liver disease, he says:
- Child-Pugh Class A: Individuals with cirrhosis with good liver cell function.
- Child-Pugh Class C: Individuals with cirrhosis whose liver function needs a liver transplant.
- Child-Pugh Class B: Everything between A and C.
Research suggests that a younger age and higher platelet count are factors in possible fibrosis regression/reversal, indicating that liver regeneration is more likely with early-stage cirrhosis than an advanced stage of the disease.
If you have HCV and advanced cirrhosis, you might reach a point where you experience liver failure, called end-stage liver disease. When that happens, your liver can no longer perform its normal functions, like making bile (needed to help digest food), producing blood proteins for clotting, supporting the immune system, and moving oxygen through the body.
Which all means you might have symptoms showing how your liver can’t get the job done any longer. They can include:
- Extreme tiredness
- Disorientation (confusion and uncertainty)
- Fluid buildup in the abdomen and arms and legs
At this point, the best and sometimes only option is a liver transplant, says Dr. Hassanein. It’s no secret: Being on an organ transplant list is tough going. In 2014, nearly 15,000 people were on the waiting list for a liver transplant. Only 7,200 liver transplants were performed in the United States that year (330 of which were organs from living donors, which is possible), leaving more than half of the people on the list waiting.
Chances of success with a liver transplant vary by individual, but about 70% of people who have a liver transplant live for more than five years. You can find more information about liver transplants at specific institutions at the Scientific Registry of Transplant Recipients.