for Veterans and the Public
Just Diagnosed: Entire Lesson - Hepatitis C for Patients
Hepatitis C is an infectious virus that can be spread from one person to another by coming in contact with infected blood. Most of those infected will not have symptoms from the virus and often do not feel sick until later stages of the disease.
Finding out you have hepatitis C can be scary at first. If you are feeling overwhelmed after you are diagnosed, try to remember that there is help and these feelings should get better over time.
- Treatments are available that have extremely high success rates, with most people cured of hepatitis C after about 12 weeks of treatment.
- Over half of those infected with hepatitis C will never have symptoms or problems associated with the infection.
- Getting in touch with a health care team that knows how to treat the disease can help you feel better and move on with your life.
- YOU ARE NOT ALONE. The CDC estimates that nearly 2.4 million Americans are living with hepatitis C.
Understand your diagnosis
People diagnosed with HCV are sometimes embarrassed or ashamed about the diagnosis and they may find themselves avoiding friends and family as a result. Worrying about how others will react to the diagnosis often prevents outreach for the support that is needed for health and well-being. Remember:
- HCV is curable due to the many new treatments available
- Risk for transmission to family members is very low
Whom you decide to tell about your HCV is ultimately up to you. However, those who could have been exposed should be informed (sexual partners and needle sharing partners). See more information about risk factors and coping with HCV.
HCV generally progresses slowly, over the course of 10 to 40 years. If your HCV is not treated, you could develop complications.
- When something attacks and damages the liver, liver cells are killed and scar tissue is formed. This scarring is called fibrosis, and it happens little by little over many years. When the enire liver is scarred, it shrinks and gets hard. This is called cirrhosis, and usually this damage cannot be undone.
- It can take up to 30 years for liver damage to turn in to cirrhosis. Early on, most people have no symptoms, but some can experience fatigue, weight loss, nausea, abdominal pain, severe itching or jaundice (yellowing of the skin, eyes).
- Liver cancer is a disease in which some of the cells in your liver begin to reproduce faster than they should. This can lead to liver masses called tumors. The medical term for the most common cancer that begins in the liver is hepatocellular carcinoma, or HCC for short.
- People with cirrhosis are at increased risk of developing liver cancer.
- Experts recommend that persons at risk of liver cancer be tested regularly, even if they have no symptoms. Testing for the presence of a disease before there are any symptoms is called screening. People at risk of liver cancer must be screened with an ultrasound of the abdomen, every 6 months, for life. A blood test for alpha-fetoprotein (AFP), which can be elevated in persons with liver cancer, can also be done every 6 months, in addition to the ultrasound.
- A liver transplant replaces a sick (referred to as cirrhotic) liver, or a liver with a tumor, with a healthy one from someone else.
- Patients are typically considered for transplant when the liver is working at roughly 10-20 percent of what is considered normal functioning.
If you have hepatitis C, you can give the virus to other people. This is true even if you are feeling perfectly fine.
To protect others from getting hepatitis C:
- Do not donate blood, body organs, tissues, or sperm.
- Do not let anyone else use your razor, toothbrush, or other personal care items.
- Cover open cuts or sores on your skin with a bandage until they have healed.
- Don't inject drugs. If you are currently injecting drugs, talk with your VA provider about trying to stop. If you can't stop, don't ever share your needles or works with anyone else.
- Practice safer sex. Use a latex barrier, such as a condom every time you have sex. Using condoms also reduces your chances of getting sexually transmitted diseases.
Following the above suggestions also can help protect you from other diseases, such as HIV and hepatitis B. Talk with your provider if you would like more information about these conditions.
Monitor your health
Once you have been diagnosed with hepatitis C, you need to pay closer attention to your health.
You can keep track of your health in two ways. First, listen to what your body is telling you, and be on the alert for signs that something isn't right. Note any change in your health--good or bad. Know when you should contact your provider.
Second, have regular lab tests done. Lab tests often can detect signs of illness before you have any noticeable symptoms.
Working with your health care provider
Showing up to your medical appointments and communicating with your health care provider on a regular basis is essential to staying health, minimizing treatment-related side effects and increasing your chance of treatment success. Here are some recommendations that will help you get the most out of your appointments with your medical provider.
- BE PREPARED. Writing down questions and concerns before your appointment and prioritizing what you want to discuss is an efficient use of your appointment time. Discussion items can include things like: medications you are taking, symptoms you are having, and changes in your living and work environment. Consider taking notes during your appointment.
- Describe your symptoms by being specific. Consider keeping a journal or diary of your symptoms.
- BE OPEN. Your health care provider needs to know everything that is going on so that they can provide appropriate care to you. If you are having feelings of depression or consuming drugs and alcohol, it is important to disclose this information so they can help you get the best result from your treatment.
- Maintain a copy of your health records. Especially recent copies of labs or imaging. Bring these copies to your visits as a reminder to discuss the results.
- Make sure you keep your appointments to complete lab work and medical tests.
- Consider taking a family member or friend with you. It can be helpful to have someone else listening or taking notes so you can concentrate on the information being provided.
- If you are uncomfortable with a treatment plan that is presented, it is vital that you voice your concerns immediately. If you remain hesitant after your concerns are addressed, ask if there are any alternatives to consider.
- Ensure you have requested contact information for someone on the health care team who may be able to answer questions after your appointment and during treatment.
Have regular lab tests
Your provider will use laboratory tests to check your health. Some of these tests will be done soon after you learn you have hepatitis C.
The lab tests look at several things:
- how well your liver is functioning
- how much hepatitis C is in your blood
- other basic body functions (such as kidneys, cholesterol, blood cells and platelets)
For information on specific tests, go to Understanding lab tests.
There are now more medications available to treat hepatitis C than there have been historically. Treatment for hepatitis C is now done with all-oral medications. These pills, called antiviral medications, are usually taken once per day. The provider treating your hepatitis C may recommend one or a combination of two to three medications to be taken for about 12 weeks. Blood work and office visits are important during this time so that your response to treatment is carefully monitored.These antiviral medications are extremely good at attacking the virus and preventing it from multiplying. These treatments also have very minimal side effects.
The purpose of taking medications to treat hepatitis C is to:
- Clear the virus from your bloodstream
- Slow the advancement of inflammation and scarring of your liver
- Lower your chances of developing cirrhosis or liver cancer
The most important factors that impact treatment results include:
- Taking medications as prescribed and not missing doses
- Your hepatitis C genotype
- The presence of cirrhosis (severe scarring of the liver)
Before starting treatment for your hepatitis C, it is important to discuss the following:
- Other medical conditions, including liver disease not related to HCV.
- Other medications you take including herbal supplements, vitamins and over-the-counter medications
- If you are currently breastfeeding or if you plan to breastfeed while on therapy; it is not currently known if hepatitis C medications pass into the breast milk
- If you are pregnant or plan to become pregnant. Some of the medications can cause birth defects and should not be taken by pregnant women or the male partners of pregnant women. Two forms of birth control may be required on certain types of medications and pregnancy may need to be avoided for six months following treatment
Potential treatment outcomes are as follows:
- Sustained virologic response (or SVR): If the hepatitis C virus is not detected in your bloodstream three months after treatment, you are considered cured. This is called a sustained virologic response and the data has indicated that you will stay free of the virus indefinitely. Most people who take the new treatments as prescribed are able to achieve SVR.
- Nonresponse: When the hepatitis C virus does not become undetectable as a result of treatment, you are considered a non-responder. There are two types, 1) partial response is where the viral load decreases, and 2) null-response is where the viral load never drops.
- Relapse: Hepatitis C is undetectable while on therapy but after treatment has been completed the viral load is once again detectable.
- Incomplete treatment: Treatment ends before the actual prescribed duration.
The goal of all hepatitis C treatment is to achieve SVR. This is considered a cure. Adherence to prescribed medication regimens will increase your chances of a cure and minimize your risk for long-term complications associated with hepatitis C.
Know when to call your provider
There isn't a need to panic every time you have a headache or feel tired. But if a symptom is concerning you or is not going away; even if it doesn't feel like a big deal, it is always best to have your provider check it out. The earlier you see a provider when you have unusual symptoms, the better off you are likely to be. While you are being treated for hepatitis C, call your provider if you experience the following:
- Extreme dizziness or shortness of breath
- Chest discomfort
- Changes in your vision
- Swelling in your legs, feet, or ankles
- Diarrhea for more than 48 hours, or blood in the stool
- Fever or other sign of infection that lasts more than 48 hours
- Extreme fatigue
Adopt a healthy lifestyle
The most important thing you can do for your hepatitis C is to talk to your provider about treatment. In addition to treatment, here are some important tips to keep your liver healthy:
- Do not drink alcohol or take drugs. Alcohol and illicit drugs are hard on your liver even when you don't have HCV. If you need help to stop drinking alcohol or taking drugs, talk with your VA provider.
- Avoid taking medicines, supplements, and natural or herbal remedies that might cause even more damage to your liver. Although Tylenol is safe in low doses, many pain relievers can cause liver problems in some very sensitive people. Check with your provider before you take any natural or herbal remedy, supplement, prescription, or over-the-counter medicine.
- Be sure to get plenty of rest, follow a healthy diet, and get moderate exercise. Ask your VA provider for suggestions about what types of food would be good for you and what forms of exercise would be appropriate.
Coinfection is a medical term meaning that you have two or more infections in your body at the same time. If you are living with both HIV and hepatitis C, then you have HIV and hepatitis C coinfection. These two illnesses are very different, so it is important that you learn about both of them.
Many people who are living with HIV also have been exposed to other infections, such as hepatitis C. Over half of people who acquire HIV through injecting drugs also acquire hepatitis C. Overall, more than one third of all Americans living with HIV have hepatitis C, too.
Having both viruses also makes it a little harder to deal with either one. There are specific medical issues that are unique to coinfected patients. Anyone known to have one of these viral infections will be checked for coinfection with the other virus.
Just Diagnosed: Resources
General hepatitis resources
Definitions of terms commonly used with viral hepatitis and related conditions.
- American Liver Foundation
A national nonprofit organization dedicated to the prevention, treatment, and cure of hepatitis and other liver diseases through research, education, and advocacy. Web site features a database directory of hepatitis clinical trials, lay-oriented facts sheets, and links to additional resources.
- Centers for Disease Control and Prevention: Viral Hepatitis
Information on all types of viral hepatitis from the CDC's National Center for Infectious Diseases. Site features related CDC guidelines and recommendations as well as training materials, slide sets, fact sheets, and key CDC hepatitis documents.
- Hepatitis B Foundation
A nonprofit organization dedicated to finding a cure and improving the quality of life of those affected by hepatitis B worldwide through research, education, and patient advocacy. Features information in English, Chinese, Korean, and Vietnamese.
HIV/Hepatitis C coinfection resources
- VA National HIV Website
Information on HIV for health care providers and patients from the Department of Veterans Affairs.
- HIV/AIDS/Hepatitis C Nightline:
Hotline providing support for people with HIV or hepatitis C and their caregivers during the evening and nightime hours. 1-800-273-AIDS or 415-434-AIDS; 5 pm - 5 am Pacific time. Also offers Spanish-language hotline at: 1-800-303-SIDA or 415-989-5212.
- NATAP: Hepatitis
Recognizing that coinfection with viral hepatitis among people with HIV is a growing problem, the National AIDS Treatment Advocacy Project (NATAP) has developed an extensive amount of information on hepatitis, both in the context of HIV coinfection and as a separate illness. NATAP provides coverage of key conferences, maintains a selection of hepatitis articles, and features an ask-the-expert forum on hepatitis C.