for Veterans and the Public
Your Next Steps: Entire Lesson
Your next steps
Finding out that you have hepatitis C can be scary and overwhelming. If you feel overwhelmed, try to remember that you can get help and that these feelings will get better with time.
- Hepatitis C does not mean bad health problems or death. Over half of people with hepatitis C will never have any health problems from it.
- Learning how to live with hepatitis C and getting in touch with a health care team that knows how to manage it will help you to feel better and get on with your life.
- You are not alone. Probably between 3 and 5 million people are living with hepatitis C in the United States.
The following are steps to take if you have been diagnosed with hepatitis C:
- Understand Your Diagnosis
- Telling Others and Finding Support
- Working with Your Doctor
- Treatment Options for Hepatitis C
Understand your diagnosis
When your doctor tells you that you have hepatitis C, it means that you have been infected with the hepatitis C virus (or HCV, for short).
You probably got hepatitis C by coming in contact with the blood of another person who is infected. Some of the ways this might have happened include the following:
- You had a blood transfusion or organ transplant before 1991.
- You shared needles or works to inject drugs, even if it was only once or many years ago.
- You were on long-term kidney dialysis.
- You were a health care worker and had contact with blood on the job.
- Your mother had hepatitis C when she gave birth to you.
- You have had many sexual partners.
- You have had tattoos and body piercings.
Don't waste too much time and energy trying to figure out how you got infected, or blaming someone or something that happened in the past. It is important that now you focus your energy on dealing with the infection and working with your VA doctor to get better.
Learn about hepatitis C
Your first step is to learn about the disease and how it can affect your life. The more you know about hepatitis C, the less confused and anxious you will be about your diagnosis. The more you learn, the better you will be at making decisions about your health.
Here are some ways to start:
- Read through the topics in Understanding the Liver and Hepatitis C Basics.
- Check out government or nonprofit educational organizations that deal with hepatitis C issues. You can find a list of them in the Resources at the end of this section.
- Use your local library. The most current information will be in the library's collection of newspapers and magazines (books about hepatitis C may be out of date by the time they are published).
- Check with your local VA medical center to see if there is an on-site library where you can find patient materials on hepatitis C.
- Talk with others who have been diagnosed with hepatitis C. Ask your doctors if they know of any support groups. Or you can go online, where you can find message boards and chat rooms. Always discuss what you learn from these sources with your doctor. The information may not be accurate, and even if it is, it may not be right for your particular situation.
- See the section on Living with Hepatitis C to learn about special diet and nutrition suggestions, complementary therapies, emotional health, and other topics.
Adopt a healthy lifestyle
The symptoms of hepatitis C infection are mild, but over time, the virus can damage your liver. You can help prevent this damage from becoming serious by following your doctor's advice and adopting a healthy lifestyle. Here are some important tips to keep your liver healthy:
- Do not drink alcohol or take recreational drugs. Alcohol and recreational drugs are hard on your liver even when you are healthy. If you need help to stop drinking alcohol or taking drugs, talk with your VA doctor.
- 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 doctor or pharmacist 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 doctor for suggestions about what types of food would be good for you and what forms of exercise would be appropriate. More information is available in the Diet and Nutrition section under Living with Hepatitis C.
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, follow these rules:
- 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 doctor 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 (or rubber) 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 or AIDS and hepatitis B. Talk with your doctor if you would like more information about these conditions.
Understand long-term effects
More than half of people with hepatitis C will never have any health problems from it. The disease generally progresses slowly, over the course of 10 to 40 years.
Out of 100 people who get hepatitis C:
- 15 will get rid of the virus without any treatment
- 85 will develop a chronic infection
Of those 85 who have a chronic infection:
- About 17 will develop liver cirrhosis in their lifetime
- About 2 will develop liver cancer
Anything that damages the liver over many years causes the liver to form scar tissue. Fibrosis is the medical term for liver scarring. When scar tissue builds up and takes over most of the liver, this is a more serious problem called cirrhosis (pronounced "sir-o-sis"). Scar tissue cannot perform any of the jobs of normal liver cells, and this causes a person with cirrhosis to slowly become ill.
There is no way of predicting who is going to get cirrhosis. Cirrhosis does not happen overnight. Many people who have cirrhosis for 5 to 10 years or more do not show clear signs of illness. However, having the hepatitis C virus for a long time (such as 20 to 30 years) increases your risk of having cirrhosis.
Over time, you can become ill from cirrhosis. Symptoms that can develop include fatigue, difficulty thinking clearly, fluid in the abdomen, bleeding in the intestines, and poor blood clotting.
It is not clear who will develop cirrhosis or complications from hepatitis C, but how you take care of yourself and your liver plays an important role in how slowly (or how quickly) hepatitis C progresses.
You can help keep your liver healthy by eating well, losing weight if you are overweight, and avoiding substances that can harm your liver, such as alcohol and illegal drugs.
To learn more about these problems, read the Liver Complications tutorial.
Telling others and finding support
Finding support means finding people who are willing to help you through the emotional and physical issues you are going to face. If you let the right people in your life know that you have hepatitis C, they can:
- offer you support and understanding
- provide you with assistance, such as running errands, helping with child care, or going with you to doctor visits
- learn from you how hepatitis C is spread and work with you to prevent the virus from spreading
Deciding to tell others that you have hepatitis C is an important personal choice. If you decide to share your diagnosis, it is best to tell people you trust and people who are directly affected, including:
- past or present sex partner(s)
- past or present needle-sharing partners
- roommates or family members
- people whom you spend a lot of time with, such as good friends
Of course, you also should inform all of your health care providers, such as your doctors, nurses, and dentists.
What you should tell others
You may want to begin with when and how you found out that you have hepatitis C. You may want to give information on how the virus is spread and how the virus is not spread.
Explain that hepatitis C is spread through blood-to-blood contact. Tell them that hepatitis C is not spread through casual contact, such as hugging or shaking hands.
When you should tell others
Many people share their diagnosis as soon as they find out. Others wait for some time to adjust to the news and to learn more about hepatitis C.
You should share your diagnosis as soon as possible with people who may be directly affected by your diagnosis, such as sex partners and needle-sharing partners. It is important that they know so that they can decide whether to get tested. If you need help telling people that they may have been exposed to hepatitis C, most city or county health departments will tell them for you, without using your name. Ask your doctor about this service.
Before telling your partner that you have hepatitis C, take some time alone to think about how you want to bring up the subject.
- Decide when and where would be the best time and place to have a conversation. Choose a time when you expect that you will both be comfortable, rested, and as relaxed as possible.
- Think about how your partner may react to stressful situations. If there is a history of violence in your relationship, consider your safety first and plan the situation carefully.
Join a support group
Some VA medical centers have a support group for Veterans with hepatitis C. You may want to ask your provider if your center has one that you can join for support and for more information about living with hepatitis C.
Joining a group of people who are facing the same challenges you are facing can have important benefits. These benefits include feeling better about yourself, making new friends, improving your mood, and better understanding your needs and those of your family. People in support groups often help each other deal with common experiences associated with having hepatitis C.
Support groups are especially helpful if you live alone or don't have family and friends nearby.
There are different types of support groups, from hotlines to face-to-face encounter groups. Here are descriptions of some of the most popular types, and suggestions about how to find them.
Find a hotline in your area by talking to a VA social worker in your hospital. Or look in the telephone book, in the yellow pages under "Social Service Organizations." Ask the hotline to "match" you with another person with a history like yours. He or she can give you practical advice and emotional support over the telephone.
- Professional help
Veterans with hepatitis C can get referrals to mental health professionals, such as psychologists, nurse therapists, clinical social workers, or psychiatrists. You will likely have a social worker who is part of the hepatitis C clinic where you will receive care. You can also get help for drug abuse.
- Self-help organizations
Self-help groups enable people to share experiences and pool their knowledge to help one another and themselves. They are run by members, not by professionals (although professionals sometimes are involved). Because members face similar challenges, they feel an instant sense of community. These groups are volunteer, nonprofit organizations, with no fees (although sometimes there are small dues).
Move forward with your life
Life does not end with a diagnosis of hepatitis C. In fact, with certain lifestyle changes and proper treatment, hepatitis C can be a mild health problem from which you may never feel ill.
Taking care of your overall health can help you deal with hepatitis C. Here are some things to remember:
- Get regular medical and dental checkups.
- Follow your doctor's advice.
- Eat a healthy diet.
- Exercise regularly.
- Avoid smoking and recreational drug use.
- Limit alcohol intake.
- Practice safer sex.
For more information on a healthy lifestyle, read the chapters in the Living with Hepatitis C section.
Working with your doctor
Hepatitis C, if left untreated, can lead to serious illness and at times even death. This is why it is so important to get medical care if you find out you have hepatitis C.
Your doctor will need to determine how hepatitis C is affecting your health. Soon after your diagnosis, your doctor will run tests to get estimates about your overall health. For descriptions of these tests, go to the Understanding lab tests section.
Treatments for hepatitis C are not perfect, but can be very effective for many people. A doctor or other health care provider can explain the best options for you.
If you work with your health care provider in planning your care, you can deal with the disease in the way that is best for you.
Start with a list or notebook. Prepare for your appointment with your doctor by writing down the following:
- any questions that you have (you can print out Questions to Ask Your Doctor about Your Diagnosis and take it to your appointment)
- any symptoms or problems you want to tell the doctor about (include symptoms such as poor sleep, trouble concentrating, feeling tired)
- medications that you are taking (include herbs and vitamins)
- upcoming tests or new information you've heard about
- changes in your living situation, such as a job change
That way you won't forget anything during the appointment.
You may want to ask a friend or family member to go with you and take notes. It can be difficult for you to take notes and pay attention to what your doctor is saying at the same time.
Go over your lab work, and keep track of your results.
If your doctor wants you to have some medical tests, make sure you understand what the tests are for and what your doctor will do with the results. If you don't understand what your doctor is saying, ask the doctor to explain it in everyday terms.
If you feel your doctor has forgotten something during the appointment, it is better to ask about it than to leave wondering whether something was supposed to happen that didn't. It's your right to ask questions of your doctor. You also have a legal right to see your medical records. After all, it's your body.
Be honest. Your doctor isn't there to judge you, but to help you make decisions about your health based on your particular circumstances. Tell your doctor about your sexual or drug-use history.
Monitor your health
Once you have been diagnosed with hepatitis C, you need to pay closer attention to your health than you did before.
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 doctor.
Second, have regular lab tests done. Lab tests often can detect signs of illness before you have any noticeable symptoms.
Know when to call a doctor
You don't need to panic every time you have a headache or feel tired. But if a symptom is concerning you or is not going away, it is always best to have your doctor check it out, even if it doesn't feel like a big deal. The earlier you see a doctor when you have unusual symptoms, the better off you are likely to be.
While you are being treated for hepatitis C, call your health care provider if you:
- are extremely short of breath or are dizzy
- have discomfort in your chest area
- notice changes in your vision
- have swelling in your legs, feet, or ankles
- have diarrhea for more than 48 hours, or have blood in the stool
- have a skin rash or unusual skin reaction around the injection sites
- have a fever or other sign of infection that lasts more than 48 hours
- are extremely tired (fatigued)
Have regular lab tests
Your doctor 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 (tests look at your kidneys, cholesterol, and blood cells)
For information on specific tests, go to Understanding lab tests.
Treatments for hepatitis C are aimed at doing 3 things:
- removing (or clearing) all the hepatitis C virus from your body
- stopping or slowing down the damage to your liver
- making you feel better
Right now, there are four drugs for hepatitis C that have been approved by the U.S. Food and Drug Administration: pegylated interferon and ribavirin (used as a two-drug combination) and, for certain patients, the addition of either boceprevir or telaprevir (for a three-drug combination). (Read more on hepatitis C medications.)
One of the most important decisions you and your doctor will make is whether to begin drug treatment, and, if so, when to start it. Treatment does not have to start right away. The disease usually progresses slowly, with slowly increasing scarring to the liver over many years, from 10 to 40 years or more. Taking pegylated interferon and ribavirin can be stressful. The treatment can cause serious side effects, such as fatigue, depression, and nausea. For some people, the best course of action is "watchful waiting," instead of starting drug treatment right away.
Watchful waiting doesn't mean that you will be doing nothing. Instead, it means that you and your doctor will carefully monitor the progression of your hepatitis C, keeping treatment with currently available medications in mind as an option.
Good candidates for watchful waiting are patients with mild liver disease or patients in whom pegylated interferon and ribavirin could be particularly dangerous. This includes patients with serious heart, lung or kidney disease, psychiatric disease, or cancer, or patients older than 75.
Watchful waiting involves the following:
- having liver enzyme blood tests once or twice a year
- having a liver biopsy every 3 to 5 years
- going to regular doctor appointments
- following your doctor's lifestyle recommendations, such as avoiding alcohol, to limit further damage to your liver
Deciding to start treatment
In general, doctors suggest treatment if you:
- have a liver biopsy that shows damage (inflammation, and particularly fibrosis)
- have early cirrhosis but are not ill
- have HIV in addition to HCV
- are wanting and are motivated to be treated
- are otherwise in good health or with well controlled other medical problems
- have acute hepatitis C (been infected within the last 6 months)
If you want to start treatment for hepatitis C, speak with your VA doctor. It is a good idea to talk about any concerns you have before you start treatment. You and your doctor will decide if treatment is right for you and which medicines might work.
For more details on starting treatment and watchful waiting, see the Treatment Decisions section.
General hepatitis resources
- 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.
- HCV Advocate
Web site of the Hepatitis Support Project, whose goal is to offer support to those who are affected by hepatitis C and related coinfections. Information and education is provided, as well as access to support groups.
- 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/AIDS Web Site
Information on HIV/AIDS 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.