Just Diagnosed With Hepatitis C? Here Are Your Next Steps
No one ever wants to get the call that a test came back positive, and the same is true of Hepatitis C (also called HCV). This virus, which causes a big hit to your liver and can range from being a mild illness to a lifelong problem, is transmitted through contact with infected blood. Usually that means through blood transfusion if you had one before the 1990s, through injected-drug use with contaminated needles, and sometimes through sex.
Let’s say you do get that call. First, deep breath. So, what’s next after that? We'll walk you through what you need to know.
STEP #1: Make Peace with Your Anxiety. It’s Normal
Thanks to big-time improvements in medication, HCV is now considered curable for most people, but concern about long-term issues like liver health is common. Also, you may be worried about infecting others—or scared that you already have—and fall down the rabbit hole of not-great internet research about possible consequences.
Acknowledge those feelings, suggests Gerardo Bustillo, M.D., an ob/gyn who treats patients with HCV at MemorialCare Orange Coast Medical Center in Fountain Valley, CA. It’s typical to be anxious. There are ways to deal with your worries, he says.
STEP #2: Write it Out
Write those fears down.
You may not know how to work through all your feelings alone, and that’s OK because you don’t have to. Putting your anxieties to paper gives you a chance to release them, and it gives you something to share, especially with your healthcare provider, says Dr. Bustillo.
Bring what you’ve written to your next appointment and go through your feelings and concerns with your doc.
STEP #3: Understand the Difference between Acute and Chronic HCV
It’s helpful to know that there are two types of HCV, because that will usually determine how the condition is treated. Acute is the early stage, when you’ve had HCV for less than six months, and chronic is the term given to those who have had HCV for longer. Docs will usually make this determination based on a conversation about exposure to risk factors. Since this virus can be in your system for years, or even decades, without causing symptoms, it can be difficult to know how long you’ve had it. That means you are more likely to be diagnosed with chronic HCV.
STEP #4: Talk With Your Doctor About Treatment Options
About 15% to 25% of people with HCV will clear it from their bodies without treatment. Doctors can tell because though the antibodies will still be in your blood, you’ll have negative results on a follow-up test called either an RNA test or a PCR test. If you’re negative on this, it means you were infected with HCV, but the virus itself is cleared from your body. Whew!
If you test positive on an RNA test, you'll be treated with antiviral medications, says Alina Allen, M.D., a gastroenterologist at the Mayo Clinic, in Rochester, MN.
Your dosage and length of treatment will be determined by your genotype and liver function.
STEP #5: Get Tested for Liver Fibrosis
You may also be tested for liver fibrosis—which means there’s an excess of connective tissue, similar to scarring—through an MRI scan.
If that comes into play, you may be on medications for a longer time period, Dr. Allen says. Some early forms of fibrosis may be able to be reversed, lowering the risk of complications later.
STEP #6: Update Your Vaccinations
Because your immune system will be working hard as it deals with HCV, it’s important to make sure you’re protected from other infection risks, says Janet Luimes, N.P., a nurse practitioner at Copeman Healthcare Centre in Vancouver, Canada. Talk with your healthcare provider about what you need specifically, but standard recommendations—which will depend on your age in some cases—include vaccinations for hepatitis A and B, the flu, pneumococcal disease, and shingles. Your doc can address whether it’s appropriate for you to have live-virus vaccinations, or if you need to wait until after HCV treatment.
STEP #7: Schedule Monitoring Appointments
To make sure that HCV is being controlled by medication, you’ll likely be put on a monthly monitoring schedule that includes tests that determine how well the virus is being cleared from your body, says Dr. Allen. This is called “sustained virologic response,” which means you have lower levels of the virus with every test, and she says that patients who maintain this response over time tend to have better long-term outcomes. She adds that if you’ve experienced liver fibrosis as a result of HCV, you’ll likely have regular testing for liver cancer—done with a CT, MRI, or ultrasound.
STEP #8: Have ‘The Talk’ with Your Romantic Partner
Although sexual transmission risk through HCV is considered low, it’s still a risk and should be discussed with your sexual partners, Dr. Bustillo says. People who have multiple sexual partners or fall into other high-risk categories—like having HIV and/or other STDs, being a gay man, or using intravenous drugs—can have higher risk of transmission.
Baby Boomers also have a higher risk, having grown up before blood was tested for HCV, which started in 1992. Whether you fall into these categories or not, practicing safe sex (use a condom or dental dam) during your treatment period is a good idea.
STEP #9: Set a Healthy-Habit Goal
Feel like everything needs an overhaul when you’re dealing with HCV? Remember to take that deep breath and a step back. Even small lifestyle changes can help with improving liver health, as well as overall immune function, Luimes suggests. These include tried-and-true wellness strategies like exercising more, de-stressing, focusing on adequate sleep, eating plenty of fruits and vegetables, and drinking enough water. Also, consider significantly reducing alcohol consumption, if not cutting it out entirely, since alcohol can exacerbate HCV infection—it causes scarring in the liver because of inflammation—and that increases liver damage.
STEP #10: Find Your People
When you have HCV, it’s very common to feel nervous, and also embarrassed or even ashamed. It’s important not to deal with a HCV diagnosis alone. Talking with friends and family members can help, but it’s also useful to speak with others who are going through the same experience. There are many online resources and support groups where you can ask questions and simply connect with others who share your concerns. One place to start? The American Liver Foundation.
STEP #11: Consider an HIV Test
People with HIV are affected disproportionally by the three main types of viral hepatitis—HCV as well as hepatitis A and hepatitis B—and those with this co-infection have more than triple the risk for liver disease and liver failure, likely because the immune system can’t handle so much being thrown at it simultaneously. They also face more severe complications than those who have just one of the infection types. If you’re diagnosed with HCV and believe that you’re high risk for HIV, ask to be tested for that as well, to make sure that you’re getting the right treatment for co-infection if necessary.
STEP #12: Stay on top of Liver Checkups
Keep in mind that HCV is curable for most people, says Dr. Bustillo, but long-term liver disease can occur. In fact, the Centers for Disease Control and Prevention reports that out of every 100 people infected with HCV, about 60 to 70 will develop chronic liver disease, which means inflammation of the liver, and between five and 20 will develop cirrhosis, where the inflammation leads to thickening in the liver cells and loss of function—although that condition can take decades to manifest. Your best tactic is to see liver health as a long-term strategy that requires healthy lifestyle habits and regular screenings, as well as possible treatment. Talk with your doctor every step of the way.