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Living With HIV

1. Living With HIV:


It can be very scary to learn that your AIDS blood test came back positive, but it's not a death sentence. The test means that you are infected with the virus that causes AIDS, the human immunodeficiency virus (HIV). Even though there is no cure for HIV disease, there are many new treatments that help keep the disease under control.

When you first find out that you have HIV, you'll need to adjust to this change in your life. Family members or friends might be able to help you, or you could talk with a counselor or social worker. Take your time and don't feel that you have to tell everyone right away about your HIV status. Then start taking the next steps:

Learn more about HIV disease
Keep track of your immune system
Decide how you want to deal with HIV


HIV is a virus that can multiply rapidly in your body. Without treatment, HIV can make your immune system very weak. If this happens, you might get an "opportunistic infection". Common germs cause these diseases. People with healthy immune systems can be exposed to these germs and not get sick. The same germs can cause serious illnesses in people with weak immune systems.

The first medication for HIV was approved in 1987. Now there are many different drugs that can be used to slow down the HIV virus. Most people with HIV disease can now expect to live healthy lives for many years.

You will probably have a lot of questions about HIV disease. There are many good sources of information, including:

  • your HIV case manager or physician
  • your local public health department

    Be careful about the information you're getting - check it out with your doctor or other sources to make sure it's accurate.


    In addition to your regular medical exams, there are two special blood tests to keep track of HIV disease. They are the viral load test and the T-cell test. The viral load test helps show how strong the HIV virus is in your body. It measures the amount of HIV in your blood. Lower levels are better. This test is used to help decide when it's time to start using anti-HIV medications, to see if the drugs are working, and to know when to change medications.

    The T-cell test helps show how strong your immune system is. It counts how many infection-fighting white blood cells you have. These cells are also called CD4+, T-4, or T-helper cells. The more, the better. If your T-cell count gets too low, you might develop an opportunistic infection. This test is used to help decide when it's time to start using anti-HIV medications, or medicines to prevent opportunistic infections.

    Your doctor will probably want to do these tests every three to six months. If your viral load stays low and your T-cell count stays high, you might choose to delay treatment.


    HIV may not be the only health issue you are dealing with. The better your health is overall, the better you can deal with HIV. Be sure to get regular medical and dental checkups, and get treatment for conditions like diabetes, high blood pressure, or high cholesterol. If you can avoid smoking, drinking too much alcohol, recreational drug use, and sexually transmitted diseases, you will probably find your HIV easier to control.

    Although there are many different medications that can help slow down the HIV virus, no one knows exactly when or how best to use them. You will need to get information and work with your doctor to decide what kind of treatments fit best with your beliefs, desires, and life style. You might choose to be very aggressive, and use anti-HIV medications very early in your disease. You might be more conservative and decide to wait until you reach specific viral load or T-cell levels. It's up to you.


    People with HIV use many different kinds of treatments for their disease. Some people believe they have stayed healthier because they use traditional healing practices, massage, acupuncture, herbs, or other therapies.

    It can be difficult to get information on how well these therapies work for HIV disease. Most of them are not studied the same way as western medicines. That doesn't mean they don't work, but you may have to find other ways to check them out. Remember, there are no "miracle" cures. If it sounds too good to be true, be very careful.


    There are things you can do to stay healthier with HIV disease. You can learn more about the disease, monitor the health of your immune system, and decide how you want to deal with your health.

    Remember, you are in charge of your own health care. You will decide which doctor to work with, and whom else you want to consult about your treatments. You will decide which treatments you want to use and when you want to use them. Take your time and learn about your options.

  • 2. Choosing an HIV Care Provider:


    Treating HIV disease is very complicated. There are choices to consider at every stage of the disease. It's best if you and your health care provider work together as a team. That makes it easier to choose and stick to your treatment plan. "Care provider" means a doctor, a physician's assistant, or a nurse practitioner.

    There are several issues you may want to consider in choosing an HIV care provider. You might decide to have them be your "regular doctor" for all of your health issues. You might use a different care provider for most health issues and use your HIV provider as a specialist. If your regular provider isn't an HIV specialist, be sure they regularly get expert advice on HIV issues.


    Many people with HIV/AIDS get their care from physicians who are specialists in infectious diseases. However, especially now that people are living longer with HIV, it's important to deal with all of your health issues. You might prefer to have a family practitioner or a specialist in internal medicine as your primary physician.

    No matter what their specialty, you will get better HIV care from providers who have experience treating people at all stages of HIV disease. Be sure to ask how many patients with HIV they have treated, and how many they currently see. HIV patients do better when their physicians have more experience treating HIV disease.


    Some providers are conservative. They prefer "tried and true" methods. Others are more aggressive. They are willing to try new and experimental treatments. Some are optimistic by nature, and focus on the hopeful or positive side when they talk about test results or future prospects. Others are more realistic. Some are pessimistic.

    Some providers are comfortable suggesting "complementary and alternative" therapies such as massage, acupuncture, or herbs. Others stick strictly to western medicine.

    If you want a lot of emotional support, you probably won't be comfortable with a health care provider who only talks about test results. The more comfortable you are with their approach to HIV treatments, the easier it will be for you to get the kind of health care you want. Talk to providers and their patients before you make your choice.


    Many patients do better when they take an active role in planning their own health care. These patients do a lot of reading on their own, and bring information to their providers. They work together to make health care decisions.

    Other patients are more comfortable with the provider making important decisions. Decide how you want to work with your provider. See if that fits with the way the provider likes to work with patients.


    The best care provider won't do you any good if you can't get in to see them. Ask them (or their receptionist) how long it usually takes to get an appointment. Find out how well they usually stay on schedule during the day.

    The type of insurance you have could limit your choice of a provider. Maybe the provider isn't on the list for your health maintenance organization (HMO) or insurance plan. Be sure to find out how you will be able to pay for their services.

    Remember, you don't need an HIV specialist to help you with most of your health care needs. If a good HIV provider is hard to find, or if it's hard to get an appointment, use a non-HIV care provider for your general health care. Just be sure that when you are dealing with HIV issues, you see an experienced HIV provider, or one who consults with an expert in HIV.


    Some people are very concerned about keeping their HIV status private. You might choose to get your HIV care from a provider in another town to protect your privacy. You will need to find your own balance between confidentiality and convenience.


    Make sure that your provider has all the information needed to give the best advice about your treatment. This starts with your medical records, which may have to be transferred from another office. When you start working with a new provider, they will probably do a lot of tests to collect "baseline" information. This helps you see how well you're doing as time goes by.

    Be sure your provider knows how you feel about using medications, and about your illness. Some people don't mind taking a lot of pills. Other people would rather take as few as possible. Your provider should also know about other treatments you are using or want to try, including non-medical ones.

    Be honest about your lifestyle. Your eating, sleeping, and work patterns can make a difference for your health care. So can your sexual practices and use of recreational drugs. If your provider seems too judgmental, try to change providers. It's better to have provider who really knows you instead of holding back information.

    Let your provider know about the important people in your life: the people who will support you if you get sick, or will help you make important medical decisions.


    Your health care needs might change as time goes by. Also, your ideas about treatment could change. Although you will probably get better medical care from a provider who has known you for a long time, you always have the right to stop seeing one provider and change to another.


    You can get help finding a care provider from your case manager or from your local Department of Health. You can also ask other people living with HIV.


    HIV medical care is very complicated, and changes quickly. This makes it important to find an HIV care provider who works with HIV/AIDS patients and is committed to staying up to date. Your relationship with an HIV provider will be better if you are comfortable with each other's personal style and approach to dealing with health issues in general, and HIV in particular.

    3. Medical Appointments


    Health care office visits are usually very short. Many times, patients leave the office feeling they haven't been listened to. They may have more questions than when they arrived. This fact sheet talks about ways to prepare for your next office visit. It also offers advice on how to get the most from your health care provider. Many people get their care from a physician's assistant or a nurse practitioner. When this fact sheet talks about your "doctor" it means any of these health care professionals.


    If you and your provider don't have the same approach to your health care, it will be difficult to be satisfied with your appointments. Fact Sheet 202 has more information on choosing a health care provider.


    What's been going on since your last appointment? Write a list to use during your appointment. Be sure to include:

  • New health problems or symptoms, related to HIV or not.
  • How long have they been going on?
  • How serious are they?
  • Don't ignore feeling tired, not sleeping well, trouble concentrating, stomach problems or emotional issues like anxiety.
  • New or increasing side effects or reactions to your medications.

    Again, for how long? How serious are they? How well you've been taking your medications. Have you missed doses? If so, why?

    Supplements or alternative therapies the doctor doesn't already know about major changes in your living situation, including employment, relationships, non-HIV health issues, and so on. You may not have time to discuss all of these, so focus on the most important items. You can leave a note with the doctor to let them know about the items you didn't get to discuss.

    Bring information with you to help your doctor. This might include pill bottles for all of the medications and supplements you're taking, or lab reports or test results from other health care providers.


    Be sure you show up for your appointments! That's the only way your doctor can make sure you're getting the best treatment to maintain your health. If you arrive late for your appointment, you can throw off the office schedule for the rest of the day. If you skip an appointment, you're wasting time for the doctor, the office staff, and other patients.

    On the other hand, it can be very frustrating to get to your appointment on time and have to wait. Usually this means that a serious health problem came up for another patient earlier in the day. If you're ever the one with that problem, you'll appreciate the doctor spending more time with you. It can be a good idea to call the doctor's office before you leave home to see if appointments are running on time, or are delayed.


    If you're having a hard time taking your medications correctly, tell your doctor! Maybe a side effect that didn't use to bother you is getting impossible to deal with. Maybe you'd do better with a simpler medication schedule. Your health care providers can't help you unless they know about these issues. Don't worry about not being a good patient or upsetting your doctor. They want the best for your health!


    When you walk in to your appointment, you should know the most important questions that you want answered before you leave. It's a good idea to write these down. This will help you organize your thoughts and make it easier to know if you're missing something.

    Take your list into your appointment. Tell the doctor about your questions. If the appointment is ending and you don't have your answers, ask for them! Doctors have to manage their time, but you also have to manage your appointment time. You might only have fifteen minutes every few months, so make the most of it!

    Medications: If a new drug gets prescribed, make sure you leave with information on exactly how to take it. What's the dosage? How often? Does it matter if you take it with food, or on an empty stomach? Does it have to be kept in the refrigerator?

    Know what side effects to expect. Are there things you can do at home to deal with them? When should you call the office if the side effects are too severe or go on for too long?

    Tests: If your doctor wants you to have some medical tests, be sure you understand what the test results are supposed to show and what your doctor will do with them. When you discuss the test results, ask again if you're not sure what the test is for and what the results mean.

    Don't be embarrassed if you don't understand the answers to your questions. Tell the doctor that you don't understand. It's not rude to insist on getting your questions answered. That's the only way to be a better partner in your own health!


    There's usually a lot of information going quickly back and forth during a health care appointment. Be sure to take that information home with you!

    Some of these tips might work for you:

  • Take notes during the appointment.
  • Ask for written material about medications, side effects, and illnesses.
  • See if there's anyone in the office you can talk to, like a nurse or a counselor, to go over what happened in your appointment.
  • Bring a friend with you to the appointment. Let them know what you want to get out of the office visit. You could give them a copy of your questions, so they can make sure they all get answered. They can also pay attention to what the doctor says. That way you can sit down together after the appointment and be sure you didn't miss anything.

  • 4. Telling Others You are HIV Positive


    When you test positive for HIV, it can be difficult to know who to tell about it, and how to tell them.

    Telling others can be good because:

  • You can get love and support to help you deal with your health.
  • You can keep your close friends and loved ones informed about issues that are important to you.
  • You don't have to hide your HIV status.
  • You can get the most appropriate health care.
  • You can reduce the chances of transmitting the disease to others.

    Telling others may be bad because:

  • Others may find it hard to accept your health status.
  • Some people might discriminate against you because of your HIV.
  • You may be rejected in social or dating situations.
  • You don't have to tell everybody. Take your time to decide who to tell and how you will approach them. Be sure you're ready. Remember, once you tell someone, they won't forget you are HIV-positive.


    Here are some things to think about when you're considering telling someone that you're HIV-positive:

  • Know why you want to tell them. What do you want from them?
  • Anticipate their reaction. What's the best you could hope for? The worst you might have to deal with?
  • Prepare yourself. Inform yourself about HIV disease. You may want to leave articles or a hotline phone number for the person you tell.
  • Get support. Talk it over with someone you trust, and come up with a plan.
  • Accept the reaction. You can't control how others will deal with your news.


    People You May Have Exposed to HIV:

    It can be very difficult to disclose your status to sexual partners or people you shared needles with. However, it is very important that they know so they can decide to get tested and, if they test positive, get the health care they need. The Department of Health can tell people you might have exposed, without using your name.


    You may want to tell your employer if your HIV illness or treatments interfere with your job performance. Get a letter from your doctor that explains what you need to do for your health (taking medications, rest periods, etc.). Talk with your boss or personnel director. Tell them you want to continue working, and what changes may be needed in your schedule or workload. Make sure they understand if you want to keep your HIV status confidential.

    People with disabilities are protected from job discrimination under the Americans with Disabilities Act (ADA). As long as you can do the essential functions of your job, your employer can not legally discriminate against you because of your HIV status. When you apply for a new job, employers are not allowed to ask about your health or any disabilities. They can only legally ask if you have any condition that would interfere with essential job functions.

    Family Members:

    It can be difficult to decide whether to tell your parents, children, or other relatives that you are HIV-positive. Many people fear that their relatives will be hurt or angry. Others feel that not telling relatives will weaken their relationships and may keep them from getting the emotional support and love that they want. It can be very stressful to keep an important secret from people you are close to.

    Family members may want to know how you were exposed to HIV. Decide if or how you will answer questions about how you got infected.

    Your relatives may appreciate knowing that you are getting good health care, that you are taking care of yourself, and about your support network.

    Health Care Providers:

    It's your decision whether or not to tell a health care provider that you have HIV. If your providers know you have HIV, they should be able to give you more appropriate health care. All providers should protect themselves from diseases carried in patients' blood. If providers are likely to come in contact with your blood, you can remind them to put gloves on.

    Social Contacts:

    Dating can be very threatening for people with HIV. Fear of rejection keeps many people from talking about their HIV status. Remember, every situation is different and you don't have to tell everybody. If you aren't going to be in a situation where HIV could be transmitted, there's no need to tell. Sooner or later in a relationship, it will be important to talk about your HIV status. The longer you wait, the more difficult it gets.

    An HIV-Positive Child's School:

    It is best to have good communication about your child's HIV status. Meet with the principal and discuss the school's policy and attitude on HIV. Meet with the nurse and your child's teacher. Be sure to talk about your child's legal right to confidentiality.


    You can get help with telling others about your HIV status from the counselors at the HIV anonymous test sites, or your HIV case manager.

    This Fact Sheet is sponsored by the US Food and Drug Administration (FDA) and is courtesy of AIDS.org

    All information serves to support, but not replace your relationship with your doctor, and is intended soley for educational purposes. Any and all personal information you may provide us with is never released to anyone at any time. Your privacy and trust is extremely important to us.

  • Original Document

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