Hep C in Depth
How Hep C Causes Harm
After it enters your bloodstream, the hep C virus (HCV) attaches to your liver cells. Once inside the cells, hep C forces them to create copies of itself. Those hep C copies then jump to other, nearby cells in your liver, infecting them one at a time. Your body's immune system tries to contain the infected cells by making scar tissue, which is almost like wrapping the infected liver cells in a bandage. "Fibrosis" is the medical term for scarring.
Over time, fibrosis damages your liver. Doctors may also use the word "cirrhosis" to describe scarring that's especially severe and won't go away. Extensive liver scarring can eventually lead to severe health problems, and may put your life at risk. (Cirrhosis, for instance, can lead to cancer.)
Sometimes It Stays, Sometimes It Goes
Not everybody who has hep C will develop liver damage. In fact, at least 15% of all people who are infected with hep C will "clear" the virus from their body within the first few weeks of infection (meaning there will be no sign of the virus at all) -- without medical treatment! The likelihood may have something to do with genetics. It appears less likely to happen in men, as well as people with HIV.
Most people do not clear the virus. If after 12 to 24 weeks the hep C hasn't gone away, they are said to have "chronic infection," which means the virus has set up shop in their liver, infecting cells and turning them into factories that make more hep C. If you're chronically infected with hep C, you may be at risk for developing liver damage -- and you need to consider hep C treatment if that damage occurs.
Keeping Track of Your Liver Health
"People who have fibrosis may not even know it because the liver is what is called a 'noncomplaining organ,' so it's important to get checked by your doctor."
-- Sherri Lewis, diagnosed with hep C in 1972
You and your health care provider -- ideally a person who specializes in hepatitis C -- will want to monitor your hep C regularly to see whether it's damaging your liver. Hep C usually does its damage very slowly, but it's unpredictable: The virus can seem to leave your liver alone for many years, and then suddenly it may begin causing severe damage within the span of a few months. This is why it's important to have regular checkups with a hep C specialist every six months or so, even if your last checkup showed no cause for concern.
Hep C can do a lot of damage to your liver without you experiencing a single symptom, so how you feel is not a reliable measure of your health. By the time you do start to feel symptoms of liver disease, it may mean you have severe liver damage that needs immediate medical attention.
To check up on your hep C infection and your liver, your health care provider may take one or more of the following steps.
- Check your liver enzymes.
Enzymes (especially two enzymes called ALT and AST) help your liver do its job. A damaged liver can cause the enzymes to spill out of your liver and into your bloodstream. Your enzyme levels alone aren't a reliable measure of your liver health (you can have normal enzyme levels despite having liver disease). But by measuring how those levels change over time, your health care provider can begin to get a better picture of how your liver is doing.
Possible Symptoms of Liver Disease
- yellowing of your skin or the whites of your eyes
- dark urine
- pain in your belly
- swollen ankles or belly
- Check your liver function.
There are a number of tests that can be done on your blood to look for "markers" of how well your liver is doing its job. These include testing your levels of platelets, albumin, bilirubin and something called prothrombin time (PT), which is a measure of how well your blood is able to clot when it needs to (for instance, to heal a cut on your skin).
- Check your hep C viral load.
A simple blood test will measure the amount of hep C virus in your bloodstream and determine whether your liver cells are still producing copies of hep C. (It can also determine whether your infection is recent or chronic.) A high hep C viral load does not mean your disease is getting worse, but it may make your hep C harder to treat (although newer meds in development may help with this problem). Regardless, a high hep C viral load may also increase your risk of passing hep C to somebody else. People who are infected with both HIV and hep C tend to have a higher hep C viral load than people with hep C alone.
- Determine your hep C viral "strain."
Your health care provider will perform a "viral genotype test" on a sample of your blood to determine what strain, or type, of hep C you have.
"My liver specialist continues to monitor once a year with a sonogram [aka an ultrasound]. It's very important to keep up with your hep C condition."
-- Sherri Lewis, diagnosed with hep C in 1972
There are at least six strains of hep C. They're called "genotype 1," "genotype 2" and so on. Most HIV-positive people in the U.S. have type 1, which is the hardest to treat with currently available medications, but is still curable in many cases. Some good news, though: New meds are being developed that may have more success against type 1 virus.
- Consider a genetic test.
In recent years, we've learned that a specific mutation within a gene called IL28B can have an impact on the odds that one of the traditional hep C medications (called "interferons") will work. African Americans and Latinos are more likely to have a variation of the IL28B gene that may make hep C treatment less likely to succeed. Anyone can have this gene variation, though, which is why genetic testing is important.
On the plus side, researchers are working to develop new meds that may be able to work around the IL28B gene issue. Fingers crossed!
- Consider a liver biopsy.
This is a routine medical procedure in which your skin is numbed, you're given meds to help you relax, and a small needle is very briefly inserted into your liver. The needle removes a tiny piece of your liver, about the size of a long, narrow postage stamp. Doctors then do tests on the sample to see how damaged your liver is.
You stay awake during the procedure, which is very quick; your doctor can fill you in on the details and address any fears you might have. (Keep in mind you don't have to have a biopsy in order to begin hep C treatment.)
How HIV and Hep C Interact
"I'm celebrating 16 years clean and sober; I think the hepatitis C and HIV diagnoses keep my recovery in place. Why risk your life?"
-- George Burgess, diagnosed with hep C in 1995
Hep C is a big deal on its own, but when you've got hep C and HIV at the same time, things can get more complicated. This is because:
- Coinfected people tend to develop liver damage more quickly.
- Coinfected people tend to have a higher hep C viral load.
- The side effects of hep C treatment may be more common and severe in coinfected people.
- Taking hep C treatment alongside HIV treatment means more pills to manage and more drug interactions to watch out for.
We know this all may sound pretty grim, but the important thing to remember is that hep C infection can be cured. You've already taken an important step toward looking after your health by reading this booklet. The next step is to figure out, with your health care provider, where to go from here.
Keeping Your Liver Healthy
Preventing liver damage is about much more than taking hep C medications: There are many extremely important things you can do to ensure you're not putting your liver health at further risk. That means:
- Don't drink alcohol.
There's no such thing as a "safe amount" of alcohol to drink when you're at risk for liver disease. Your liver filters the alcohol out of your blood, and the less you drink, the easier its job is and the less likely it is to get damaged. So if you're a big drinker now or you binge drink, every little bit less you drink can make a difference. Obviously, cutting out alcohol entirely would help the most, but it's usually best to take things one step at a time. Keep in mind that your health care provider may be able to connect you with medicines, counseling and other help you may need to cut down on alcohol.
Remember: Beer and wine count just as much as the hard stuff!
- Quit smoking cigarettes.
We know, you don't need another reminder about why it's bad to smoke. But we'd be irresponsible if we didn't mention this: Smoking increases your liver cancer risk, and it hurts your organs and immune system in other ways that can lead to serious long-term damage. Just as with alcohol, even cutting down on the amount you smoke can help.
- Get help to beat drug addiction.
If you use injection drugs or snort cocaine, remember not to share any equipment -- you don't want to accidentally infect others or become infected with a new strain of hep C (or HIV!). If you think you might be addicted to drugs or alcohol, get help at your local HIV organization or clinic, or talk to your case worker if you have one. There are many forms of addiction treatment, some of which are perfectly safe to take alongside HIV or hep C treatment.
- Avoid taking meds that can cause liver damage.
This won't always be possible, because some important meds have some liver risk. Be sure to look at the warning labels of over-the-counter medicines, and check with your doctor or pharmacist to make sure specific meds are safe. This also goes for anything else you take: herbal treatments, vitamins, you name it! Even things you might think are not an issue can cause huge problems, so it's better to be safe and check with a doctor first.
"Fear, hopelessness and fatigue diminish the spirit. To combat these feelings: Take a walk around the block. Smile more. Call an old friend. Make a new friend. Laugh more. Volunteer. Eat well. Rest. Take your meds. Meditate. Take a few deep breaths. Begin to design the life you always imagined."
-- Kevin Maloney, diagnosed with hep C in 2010
- Eat healthy, wholesome foods.
The healthier you eat, the less work your liver has to do to clear out toxins. Use good judgment when deciding what to eat and how much of it to eat; avoid crazy diets and try to stay away from junk food. Certain supplements can also be good for liver health (pure milk thistle is one example), but as we noted above, be sure to get your doctor's OK before you start taking them.
- Exercise and reduce your stress.
Obesity can be especially dangerous if you're living with hep C: The extra fat can make its way into your liver and accelerate scarring. Meanwhile, stress may be an unavoidable part of life (especially when you're living with two chronic illnesses!), but counseling, support and staying active can help you reduce the odds that stress will begin to hurt your immune system. There are so many different ways to exercise and reduce stress; talk with others for tips and keep searching for a solution that works for you.
- Keep your HIV in check.
You've got two viruses to manage, and it's important to pay attention to both of them. Keeping your HIV under control (by taking HIV meds and sticking to your treatment regimen) helps keep your immune system healthy and your CD4 count up. The stronger your immune system is, the better able your body will be to fight hep C and ensure the success of some hep C treatment regimens.
- Get regular hep C checkups.
As we mentioned earlier, hep C can go from doing no damage at all to doing a lot of damage, without you feeling any symptoms. Meanwhile, our knowledge of hep C and how to treat it is rapidly improving. So it's important to check in with a hep C specialist every six months or so to make sure your liver is OK and you're up to date on the latest info.