for Veterans and the Public
Just Diagnosed: Entire Lesson - Hepatitis C for Patients
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.
- Treatments are available that have extremely high success rates, with most people cured of hepatitis C after about 12 weeks of treatment.
- 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.
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 this Hepatitis C website.
- 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 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.
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.
Here is a snapshot of the long-term effects of hepatitis C.
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.
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.
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.
How is hepatitis C treated?
Hepatitis C virus is treated with all-oral medications. These pills, called antiviral medications, are usually taken once per day. These antiviral medications are extremely good at attacking the virus and preventing it from multiplying. Today's antiviral treatments are extremely successful at curing the virus and have very minimal side effects.
The purpose of taking antiviral medications for hepatitis C is to:
- remove (or clear) all the hepatitis C virus from your body permanently
- stop or slow down the damage to your liver
- reduce the risk of developing cirrhosis (advanced scarring of the liver)
- reduce the risk of developing liver cancer (hepatocellular carcinoma, referred to as HCC)
- reduce the risk of liver failure and the need for a liver transplant
What is HIV coinfection?
Coinfection is a medical term meaning that you have two or more infections in your body at the same time. If you have 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.
- HIV stands for the human immunodeficiency virus. The virus attacks the body's immune system and, over time, can lead to AIDS.
- Hepatitis C is a virus that can damage your liver slowly over time.
Why is HIV-hepatitis C coinfection an issue?
Many people who have HIV also have been exposed to other infections, such as hepatitis C. Over half of people who become HIV infected through injecting drugs also become infected with hepatitis C. Overall, more than one third of all Americans infected with HIV have hepatitis C, too. So HIV-hepatitis C coinfection is common.
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.
What do coinfected people need to be concerned about?
Doctors and patients always should try to bear in mind that there are two infections to deal with. Hepatitis C can mean that a person's liver is more sensitive to the effects of HIV medications. Likewise, if coinfected persons are taking hepatitis C medications (interferon shots and ribavirin pills), their doctors need to be extra careful in monitoring them, because their bodies are more sensitive to the effects of these medications. Being coinfected is not a terrible situation, but it requires more attention.
How can HIV affect me?
HIV is the virus that causes AIDS. It is spread mainly through blood and sexual contact. You can have HIV and feel healthy. Over many years, however, the virus can wear down your body's immune system, making it hard for your body to fight off dangerous infections. Having HIV also can increase your risk of getting certain cancers.
Even though there is no cure for HIV infection, there are many medications that can help people with HIV live longer and healthier lives.
You will want to learn much more about HIV, so that you can do everything possible to stay healthy. You also will need to learn how to avoid giving HIV to others. You can find information on the VA HIV/AIDS website.
How can hepatitis C affect me?
Hepatitis C is a disease of your liver. It is caused by infection with the hepatitis C virus. The virus is spread mainly through contact with infected blood.
Many people don't know that they have hepatitis C, because the symptoms of the infection often are very mild. Some people with hepatitis C feel tired or have an upset stomach. Others may not have any symptoms at all.
Even if you do not have any symptoms, hepatitis C is still a serious illness. There are medications, called interferon and ribavirin, that can make the hepatitis C virus go away in some people, and even better medications are being developed. It is important to get care for hepatitis C because it stays in your body. You can give hepatitis C to someone else and can develop other health problems yourself.
Hepatitis C is the main cause of cirrhosis of the liver in the United States in 2006. In cirrhosis, healthy liver tissue is replaced by scar tissue. Over time, with cirrhosis, the liver can stop functioning well, and a person even may need to be considered for a liver transplant.
Will having hepatitis C affect my HIV treatments?
No. But some HIV treatments can damage your liver, so your doctor may choose specific drugs for you.
Will having HIV affect my hepatitis C treatment?
No. But being coinfected means medications to treat hepatitis C don't work quite as well in you. Still, the drugs are successful 30-75% of the time. Working closely with your doctor will give you the best chance for successful treatment.
Can I give HIV or hepatitis C to someone else through sex?
HIV is spread by infected blood, semen, and vaginal fluids. Practicing safe sex is the best way to keep other people from getting HIV.
Hepatitis C is spread mainly by the blood and rarely by sex. But you still can give hepatitis C to someone you have sex with if you're not careful.
If you have sex, the best thing to do is practice safer sex all the time. To do so, always use a condom, dental dam, or other latex barrier and avoid "rough sex" or other activities that might cause bleeding. For more information, see tips for using condoms and dental dams on the VA HIV Web site.
Can I give HIV or hepatitis C to someone by using drugs with them?
Sharing needles or works to inject drugs is one of the easiest ways to spread hepatitis C and HIV. By sharing needles or works, you even can spread both of these viruses at the same time.
The best thing to do, especially if you have hepatitis C or HIV, is not use drugs. Talk to your doctor about getting help to stop.
If you use drugs, make sure that your needle and works are clean (or brand new) every time and never share them with anyone else. Snorting drugs such as cocaine also may spread hepatitis C, and possibly HIV.
Is there a cure for HIV or hepatitis C?
There is no cure for HIV, but it often can be controlled. Hepatitis C can be treated successfully. This is like a cure, but in rare cases the virus still causes problems later.
Medications for both diseases keep getting better. Talk with your doctor about these treatments for HIV and hepatitis C. Educate yourself about your treatment choices as much as you can.
How can I slow down my HIV and hepatitis C infections?
Having only HIV or hepatitis C is difficult enough. Finding out that you have both at the same time might seem overwhelming. The best way to keep your coinfection from becoming a serious health problem is to keep yourself and your liver healthy by following these guidelines:
Do not drink alcohol.
Alcohol weakens your immune system and damages your liver even when you are healthy. Drinking alcohol heavily when you have HIV and hepatitis C makes the damage much worse. Remember, there is no "safe" amount of alcohol you can drink when you have HIV and hepatitis C. It doesn't help to switch from "hard" liquor to beer, cider, or wine. If you need help to stop drinking alcohol, talk to your doctor.
Get vaccinated against other hepatitis viruses.
Having hepatitis C does not mean that you can't get other kinds of hepatitis. Talk to your doctor about getting vaccinations (or shots) to protect you from getting hepatitis A and B.
Avoid taking medicines, supplements or natural or herbal remedies that might cause more damage to your liver.
Even ordinary pain relievers in high doses can cause liver problems in some people. Check with your doctor before you take any natural or herbal remedy, supplement, prescription, or nonprescription medicine. And, make sure your doctor knows all the medicines you are taking for HIV and hepatitis C.
Don't use illegal drugs.
Remember that these drugs can make your illness worse. Talk with your doctor if you can't stop taking drugs.
Respect your body.
Eat healthy food, drink plenty of water, and get restful sleep. Try to exercise every day.
Ask your doctor where you can get support in your area. If you already get services from an AIDS organization, ask about support groups for people who have HIV and hepatitis C.
HIV and hepatitis C are two of the most important medical issues today. Try to educate yourself about them. Ask your doctor if you need help making sense of anything you hear on the news or read in a newspaper.
Follow your doctor's advice.
Follow all instructions you get from your doctor. Try to keep all of your appointments. Call your doctor immediately if you have any problems.
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.
- 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.