Living With HIV/AIDS

What is HIV and how did I get it?

The first cases of AIDS were identified in the United States in 1981, but it most likely existed here and in other parts of the world for many years before that. In 1984 scientists proved that HIV causes AIDS.

You might have caught HIV by having unprotected sex – sex without a condom – with someone who has HIV. Or you might have shared a needle to inject drugs or shared drug “works” with someone who has HIV. Babies born to women with HIV also can become infected. Although in the past you could get HIV from a blood transfusion, today it is unlikely you got infected that way because all blood in the United States has been tested for HIV since 1985. You could not have gotten HIV just from working with or being around someone who has HIV – and no one can get it from you that way. HIV also is not spread by insect bites or stings, on toilet seats, or through everyday things like sharing a meal.

What is the difference between HIV and AIDS?

When HIV enters your body, it infects your “CD4 cells” and kills them. CD4 cells sometimes called T-helper cells) help your body fight off infection and disease. Usually, CD4 cell counts in someone with a healthy immune system range from 500 to 1800.

When you lose CD4 cells, your immune system breaks down and you can’t fight infections and diseases as well. When your CD4 cell count goes under 200, doctors say you have AIDS. Doctors also say you have AIDS if you have HIV and certain diseases, such as tuberculosis or Pneumocystis carinii [NEW-mo-SIS-tis CA-RIN-nee-eye] pneumonia (PCP), even if your CD4 cell count is over 200.

How can I stay healthy longer?

There are many things you can do for yourself to stay healthy. Here are a few:

  • Make sure you have a doctor who knows how to treat HIV.
  • Follow your doctor’s instructions. Keep your appointments. Your doctor may prescribe medicine for you. Take the medicine just the way he or she tells you to because taking only some of your medicine gives your HIV infection more chance to fight back. If you get sick from your medicine, call your doctor for advice – don’t change how you take  your medicine on  your own or because of advice from friends.
  • Get immunizations (shots) to prevent infections such as pneumonia  and flu.Your doctor will tell you when to get these shots.
  • If you smoke or if you use drugs not prescribed by your doctor, quit.
  • Eat healthy foods. This will help keep you strong, keep your energy and weight up, and help your body protect itself.
  • Exercise regularly to stay strong and fit.
  • Get enough sleep and rest.
  • Take time to relax. Many people find prayer or meditation, along with exercise and rest, helps them cope with the stress of having HIV infection or AIDS.

There also are many things you can do to protect your health when you prepare food or eat, when you travel, and when you’re around pets and other animals. You can read more about these things in the brochures in the CDC Opportunistic Infections Series. You can get these brochures and other information on HIV from the CDC National AIDS Hotline at (800)342-2437 or at the CDC Internet address listed at the end of this booklet.

What can I expect when I go to the doctor?

At your first appointment your doctor will ask you questions, do a checkup, draw blood, and do a tuberculosis skin test and other tests. Your doctor also may give you some immunizations (shots). Tell your doctor about any health problems you are having so that you can get treatment. You also should ask your doctor any questions you have about HIV or AIDS, such as what to do if your medicine makes you sick, where to get help in quitting smoking or drug use, or how to eat healthy foods.

When your doctor draws blood, it is used for many tests, including the CD4 cell count and “viral load testing.” Viral load testing measures the amount of HIV in your blood. Viral load tests help predict what will happen next with your HIV infection if you don’t get treatment. They are used with CD4 cell counts to decide when to start and when to change your drug therapies.

Keep your follow-up appointments with your doctor. At follow-up appointments you and your doctor will talk about your test results, and he or she may prescribe medicine for you.

What is the treatment for HIV or AIDS?

HIV and HIV-related illnesses vary from person to person. People can live with HIV for many years. Your doctor will design a medical care plan for you.

Your doctor will tell you about the risks and benefits of the drugs for HIV and when you need to start taking them. Many drugs are used together to treat HIV. These drugs often include “antiretroviral” medicines. These medicines are powerful drugs, but they are not cures for HIV. If your doctor prescribes any of these drugs for you, take them exactly as prescribed.

If your HIV infection gets worse and your CD4 cell count falls below 200, you are more likely to get other infections. Your doctor will prescribe TMP-SMX (trimethoprim-sulfamethoxazole [try-METH-o-prim – sul-fa-meth-OX-uh-zole]) – also known as Bactrim®, Septra®, or Cotrim®* – or other drugs, to prevent PCP.

Your doctor also may prescribe other drugs for you, depending on your CD4 count. Most people have no problem with these medicines. But if you get a rash or have other problems, call your doctor right away to discuss other treatments. Don’t change the way you are taking any of your medicines without first talking with your doctor. If you don’t take your medicines the right way, you might give your HIV infection a better chance to fight back.

What are some of the other diseases I could get?

In addition to PCP, you also have a higher chance of getting other diseases, depending on your CD4 count. These are called “opportunistic infections” because a person with HIV can get the infection if his or her weakened immune system gives it the opportunity to develop. More than 100 germs can cause opportunistic infections. Some of these infections include:

MAC (mycobacterium avium [my-ko-bak-TEER-i-um a-VEE-i-um] complex)
CMV (cytomegalovirus [si-to-MEG-eh-lo-vi-res])
TB (tuberculosis [too-burr-qu-LO-sis])
toxo (toxoplasmosis [tok-so-plaz-MO-sis])
crypto (cryptosporidiosis [krip-to-spo-rid-e-O-sis])

You can learn more about how to prevent the most serious opportunistic infections from the brochures in the CDC Opportunistic Infections Series, which you can get by calling the CDC National AIDS Hotline at (800) 342-2437.

Watch out for certain symptoms:

  • breathing problems
  • mouth problems, such as thrush (white spots), sores, change in taste, dryness, trouble swallowing, or loose teeth
  • fever for more than two days
  • weight loss
  • poor vision or “floaters”(moving lines or spots in your vision)
  • diarrhea
  • skin rashes or itching

Tell your doctor right away if you have any of these problems. Your doctor can treat most of your HIV-related problems, but sometimes he or she may need to send you to a specialist. Visit a dentist at least twice a year, or more often if you have mouth problems.

How do I protect other people from my HIV?

  • The surest way to avoid transmission of sexually transmitted diseases is to abstain from sexual intercourse, or to be in a long-term mutually monogamous relationship with a partner who has been tested and you know is uninfected.
  • For persons whose sexual behaviors place them at risk for STDs, correct and consistent use of the male latex condom can reduce the risk of STD transmission. However, no protective method is 100 percent effective, and condom use cannot guarantee absolute protection against any STD.
  • If you are allergic to latex, you can use polyurethane (a type of plastic) condoms.
  • If male condoms are not available, use female condoms.
  • Condoms lubricated with spermicides are no more effective than other lubricated condoms in protecting against the transmission of HIV and other STDs. In order to achieve the protective effect of condoms, they must be used correctly and consistently. Incorrect use can lead to condom slippage or breakage, thus diminishing their protective effect. Inconsistent use, e.g., failure to use condoms with every act of intercourse, can lead to STD transmission because transmission can occur with a single act of intercourse.
  • For oral sex, use protection such as a condom, dental dam (a square piece of latex used by dentists), or plastic food wrap. Do not reuse these items.
  • Keep sex toys for your own use only and don’t use someone else’s sex toys.
  • Don’t share drug needles or drug works. In many places there are needle exchange programs. Use them. Better yet, seek help if you  inject drugs.You can fight HIV much better if you don’t have a drug habit.
  • Tell people you’ve had sex with that you have HIV. This will not be easy, but it will help them get the help they need. Your local public health department may help you find these people and tell them they have been exposed to HIV. If they have HIV, this may help them get care and avoid spreading HIV to others.
  • If a woman you had sex with is pregnant, even if you are not the father, it is very important that you tell her you have HIV. If she has HIV, she needs to get early medical care for her own health and to protect her baby.
  • Don’t donate blood, plasma, or organs.
  • Keep razors or toothbrushes for your own use only and don’t use  someone else’s razor or toothbrush. HIV can be spread through fresh blood on such items.

Family Planning and Pregnancy

Is there any special advice for women with HIV?

Yes. If you are a woman with HIV, your doctor should check you for sexually transmitted diseases (STDs) and perform a Pap test at least once a year.

Women with HIV are more likely to have abnormal Pap tests. If your Pap test is abnormal, your doctor may need to repeat it or do other tests. If you have had an abnormal Pap test in the past, tell your doctor.

If you are thinking about either avoiding pregnancy or becoming pregnant, talk with your doctor about important issues such as:

  • What birth control methods are best for me?
  • Will HIV cause problems for me during pregnancy or delivery?
  • Will my baby have HIV?
  • Will treatment for my HIV infection cause problems for my baby?
  • If I am pregnant and want an abortion, where can I go for it? What if they won’t help me because I have HIV?
  • If I choose to get pregnant, what medical and community programs and support groups can help me and my baby?

What if I become pregnant?

If you become pregnant, talk to your doctor right away about medical care for you and your baby. You also need to plan for your child’s future in case you get sick.
Your HIV treatment will not change very much from what it was before you became pregnant. You should have a Pap test and tests for STDs during your pregnancy. Your doctor will order tests and suggest medicines for you to take. Talk with him or her about all the pros and cons of taking medicine while you are pregnant.

If you decide to have your baby, talk with your doctor about how you can prevent giving HIV to your baby. It is very important that you get good care early in your pregnancy. The chances of passing HIV to your baby before or during birth are about 1 in 4, or 25%, but treatment with zidovudine [zy-DAH-vue-deen], sometimes called ZDV, AZT, or Retrovir®*, has been shown togreatly lower this risk. Your doctor will want to have you on a drug treatment that includes ZDV.

Although you are pregnant, you should still use condoms each time you have sex, to avoid catching other diseases and to avoid spreading HIV. Even if your partner already has HIV, he should still use condoms.

After birth, your baby will need to be tested for HIV, even if you took ZDV and/or other drugs while you were pregnant. Your baby will need to take medicine to prevent HIV infection and PCP. Talk with your doctor about your baby’s special medical needs. Because HIV infection can be passed through breast milk, you should not breast-feed your baby.

Where can I find help in fighting HIV?

If you are living with HIV or AIDS, you need many kinds of support – medical, emotional, psychological, and, yes, financial. Your doctor, your local health and social services departments, your local AIDS service organization, and your local library can aid you in finding all kinds of help:

  • answers to your questions about HIV and AIDS
  • doctors, insurance, and help in making health care decisions
  • food, housing, and transportation
  • planning to meet financial and daily needs
  • support groups for you and your loved ones
  • home nursing care
  • help in legal matters, including Americans with Disabilities Act (ADA) claims
  • confidential help in applying for Social Security disability benefits

You also can get information on these things from the CDC National AIDS Hotline at (800) 342-2437.

Many people living with HIV feel better if they can talk with other people who also have HIV. Here are some ways to find others with HIV:

  • Contact your local AIDS service organization. Look under “AIDS” or “Social Service Organizations” in the yellow pages of your telephone  book.
  • Contact a local hospital, church, or American Red Cross chapter for referrals.
  • Read HIV newsletters or magazines.
  • Join support groups or Internet forums.
  • Volunteer to help others with HIV.
  • Be an HIV educator or public speaker, or work on a newsletter.
  • Attend social events to meet other people who have HIV.

Thousands of people are living with HIV, and AIDS, today. Many are leading full, happy, and productive lives. You can too if you work with your doctor and others and take the steps outlined in this booklet to stay healthy.