You can live well with HIV, and you’re not alone!

 

Sure, it’s a shock to hear that you’re HIV positive and embarking on a life living with HIV. But remember, there’s a lot of help out there for you.

It may take some time for the news of your HIV positive status to sink in and begin adjusting to your new life. It will also certainly be an emotional road on top of it being a physical one. But this information has been written to answer questions that many people have after testing positive. You’re not alone, and with resources and effort you can live a healthful life with HIV.

We hope that herein, you’ll find answers that will help you understand more about your diagnosis. Your first priority is getting informed about HIV, taking charge of your health, asking your doctor any questions and utilizing all the support networks.

Take a moment to review the information presented below and remember, right now the most important relationship is with your doctor. Together, get your game plan together!

 

What are HIV and AIDS?

HIV/AIDS affect not only the person who has the infection, but also partners, friends, and family. New drugs and research are making it possible to live longer – and better – with HIV infection or AIDS.

The more you know about HIV/AIDS, the better you can guard your health, minimize the impact of the infection and its treatment and enhance the quality and length of your life.

 

The Basics

HIV stands for human immunodeficiency virus. This virus causes AIDS. Being infected with HIV, however, is not the same as having AIDS. People who have tested positive for HIV have been known to stay healthy for years, even decades, with proper treatment. Over time – in many cases, a long time — HIV slowly weakens the immune system until AIDS develops.

AIDS stands for acquired immune deficiency syndrome. In medicine, a syndrome is a group of symptoms that all together indicate the presence of a disease. When a person has AIDS, his or her body has been weakened to the point where it is not longer able to effectively fight disease. As a result, many other health problems develop when a person has AIDS.

Origins of AIDS and HIV

In the United States, AIDS and HIV hit the headlines in the early 1980s. In 1982, public health officials began using the term “acquired immunodeficiency syndrome” or AIDS. Formal tracking of AIDS cases in the United States began in 1982. The following year, scientists participating in an international committee discovered HIV as the cause of AIDS.

With time and research, it has become clear that HIV and AIDS existed decades before 1982. In the mid- to late-1970s, doctors in Los Angeles and New York noted growing numbers of gay men developing rare types of pneumonia, cancer and other illnesses.

An analysis of a blood sample taken from a man in 1959 in Kinshasa, Democratic Republic of Congo, uncovered HIV-1. (HIV-1 is the most widespread type of HIV in the developed world.) Genetic analysis of the blood sample suggests that HV-1 may have developed from a single virus in the late 1940s or early 1950s.

Precisely how and when HIV came to exist is still being studied. In 1999, an international research team discovered HIV-1 in a group of chimpanzees native to west equatorial Africa. They have suggested that HIV-1 spread to humans when hunters became exposed to infected chimpanzee blood.

Myths and theories about the spread of HIV abound – a promiscuous flight attendant or the purposeful spread of a man-made virus (a conspiracy), for example – have all been suggested. Most of these theories have been discredited or have not proven to have a basis in fact.

Progression of HIV to AIDS

People commonly talk as if there is the infection (HIV) and then there is the disease (AIDS). HIV actually has several stages. HIV can move through these stages slowly or quickly.

Studies of people who don’t receive treatment for HIV show that about half of HIV-infected people progress to AIDS within 10 years of being infected. Three out of four HIV-infected people progress to AIDS within 15 years of infection.

Children who are born with HIV and people who got HIV through a blood transfusion tend to get sick more quickly.

The stages of HIV tend to follow the pattern highlighted below, although actual times vary a great deal from one person to another:

Time After Infection
Stage
3 to 6 months HIV spreads within the body and becomes detectable when an HIV test is done.
1 to 10 years A person is HIV, but healthy.
3 to 10 years Minor symptoms may appear.
8 to 12 years Symptoms of HIV or AIDS begin to appear.

When HIV Becomes AIDS

AIDS is the last stage of HIV-infection. A doctor can make the diagnosis of HIV infection that has become AIDS. This diagnosis is based on guidelines established by the Centers for Disease Control.

Since 1996, powerful virus-fighting drugs have been introduced that dramatically delay the progression of HIV to AIDS. Other new treatments and drugs are now being used to treat illnesses associated with AIDS.

Anti-retroviral therapy doesn’t cure AIDS, nor does it prevent the spread of HIV. Antiretrovirals do, however, extend life and improve the quality of life while living with HIV.

As HIV progresses, the immune system becomes weakened. The body isn’t able to defend itself against common bacteria and viruses that a healthy immune system can do easily. These are called opportunistic infections because they take advantage of the weakened immune system. If you are on antiretroviral therapy, you can go along time before developing opportunistic infections.

Positive Diagnosis

If you just learned you are HIV positive, it’s natural to feel scared, confused and unsure what to do next. First, concentrate on the good news – HIV is not a death sentence. Today, there are many effective medications and treatments available that can help control the disease and live a healthy and productive life.

Second, take a proactive approach to your new diagnosis —put yourself in control. If you’re recently diagnosed, here are a few things you should start doing now:

Choose an HIV specialist:

This is one of the most important choices you will make. Look for a physician who specializes in HIV care. Your physician should be someone with whom you can talk openly. Think of you and your physician as a team. You will be working closely together to maintain your quality of life and take the very best care of you possible.

Start by asking yourself a few questions about what is important to you in a doctor. Is it location, availability, reputation, age, ethnicity, additional services offered, or openness to alternative therapies? Make a detailed list for yourself. Then, begin researching HIV physicians you think fit your criteria. You can also ask for referrals from others with HIV/AIDS.

AIDS Healthcare Foundation is the largest medical provider for people living with HIV/AIDS in the US.  It is renown for its quality healthcare and employs only expert healthcare professionals in the field of HIV/AIDS.  To learn more about AHF’s heathcare centers in California, Florida and Washington, DC, click here.

   
 Find an HIV/AIDS organization:

Finding an organization like AIDS Healthcare Foundation can be an excellent addition to your medical treatment. HIV/AIDS organizations provide information and advocate for people living with HIV/AIDS. They can serve as a support structure for newly diagnosed individuals by helping them with healthcare concerns and other issues that come up related to their HIV status.
   
 Learn more about the disease:

Knowledge really is power and the more you know about your disease, the more actively and intelligently you can participate in your own medical care. Take the time to learn more about the disease, the medical tests involved, insurance issues, etc. However, don’t overwhelm yourself. HIV is a complex disease. There is much to know. Give yourself the time to absorb the information you’ve learned and don’t be afraid to ask questions of your healthcare provider.
   
 Develop a strategy to maintain your physical and emotional health:

As a newly diagnosed person, you may feel depressed, or feel like isolating yourself from family, friends and others. It is extremely important at this time to maintain connections with people and do everything you can to take the best care of yourself. You know that when you eat right, exercise, get enough rest, and have a strong support system in place, you feel better and stronger.

Now is the time to be vigilant about these things. You will also need to maintain adherence to any new drug regimen your physician may prescribe for you. Take the time to do what you need to do for you, don’t be afraid to ask questions and you will be on your way to taking control of your health.

Coping with the Diagnosis

Learning you have HIV can cause many emotions from fear to worry to anger to sadness and depression. One way to fight the fears and anxiety is to learn as much as possible about HIV/AIDS. This lets you take the best care of yourself and to make the best decisions about your treatment.

If you can’t sleep, eat, concentrate or have thoughts of suicide talk to your doctor. Treatment can be very helpful if you are depressed or feel anxious..

Go to the most informed sources you can to learn more. These include your doctor and national and local AIDS organizations. Going to support groups and talking to others can be very helpful..

With the newest drugs and treatment programs, people today are living with HIV longer and with a better quality of life..

Opportunistic Infections

Some of the more common opportunistic infections are:

Cryptosporidiosis (Crypto)
Cytomegalovirus (CMV)
Hepatitis C (Hep C)
Human papillomavirus (HPV)
Mycobacterium avium complex (MAC)
Pneumocystis carinii pneumonia (PCP)
Toxoplasmosis (Toxo)
Tuberculosis (TB)

HIV Treatments –

Deciding to Begin Anti-retroviral Therapy

Deciding when to start anti-retroviral therapy is both challenging and personal. The decision should be made in partnership with an experienced, trusted doctor. It’s important to be well informed about both the benefits and the risks of anti-retroviral therapy before starting it.

Many people live a long time without symptoms of HIV and without using anti-HIV therapy. Making a decision about treatment isn’t something that has to be done the right away after you learn you have HIV.

Anti-retroviral therapy requires a long-term commitment to taking many pills or medicines as prescribed. Some of these medicines must be taken several times a day. Others have special requirements such as being taken with food – or several hours before or after meals.

Anti-HIV drugs are powerful. They have side effects that must be considered. Finally, the longer a person is on anti-retroviral therapy, the more likely it is that drug resistance will develop. (This means that a drug no longer effective in fighting HIV).

When deciding to start anti-HIV therapy, you should take into consideration:

 

Viral load levels (the amount of HIV in the blood)
CD4 cell counts. If a person’s CD4 cell count is 200 or below, most doctors would recommend anti-HIV therapy, even if there were no other symptoms of disease. Therapy should be considered if the CD4 cell count is below 350 or falling fast.
General health status. Are there symptoms of HIV-related disorders or recurring health conditions that aren’t responding to treatment?
Your own feelings anti-HIV therapy
Your commitment to taking the medications as prescribed for the rest of your life.
The impact on your quality of life
The risk of the disease getting worse (progressing)

Treating HIV/AIDS

Since 1987, when the first anti-retroviral drug was approved for treating HIV, many life-extending advances have been made in drugs to treat HIV/AIDS. That first drug, azidothymidine (AZT), is now one of more than 22 drugs that have been approved by the U.S. Food and Drugs Administration (FDA) to fight AIDS-related conditions.

There are four classes of anti-retrovirals:

 

Nucleoside reverse transcriptase inhibitors (NRTIs)
Non-nucleoside reverse transcriptase inhibitors (NNRTIs)
Protease inhibitors
Fusion inhibitors

 

The first three classes work by interfering with the process by which the HIV replicates itself inside a cell. The fourth works by preventing the HIV from getting into the cell in the first place.

In highly active antiretroviral therapy (HAART), three or more drugs from different classes are combined to fight the HIV. Combining drugs makes them more effective. This also means that you have to take many drugs at different times of day. Some need to be taken with food, some on an empty stomach. Some may interfere with other drugs you need to take.

It is important to take the drugs as the doctor prescribed every day to be as effective as possible. Each drug regimen is tailored to the individual. Just because you know someone on a particular regimen doesn’t mean that it’s the regimen you should be on.

Anti-retroviral drugs neither cure HIV/AIDS nor prevent it from being spread to other people.

Anti-retrovirals are powerful drugs and can cause side effects. It is important to be as well informed as possible about the drugs you are taking. Talk to your doctor if you have side effects that are unpleasant or don’t go away over time.

Over the course of treatment, the combination of drugs being used may need to be changed. Changes in a drug program are usually done when:

 

CD4 counts or viral load tests show the virus isn’t being controlled
Side effects become a problem
One or more drugs is not long effective against the virus. This is called drug resistance.

 

Sometimes a doctor will stop treatment for two weeks or more and then restart it. This may be done because of side effects, drug resistance or pregnancy. Stopping antiretroviral therapy should only be done under a doctor’s supervision.

Side Effects of Anti-retroviral Therapy

Anti-HIV drugs do cause side effects. Just because a drug has side effects doesn’t mean that everyone who takes it will have those effects. And just because a drug has side effects, doesn’t mean it shouldn’t be taken.

What these facts do mean, however, is that you should know and watch out for possible side effects.

Taking drugs the way they are prescribed helps keep side effects low. When side effects do happen, it is usually in the first two to four weeks after starting a particular drug. Many side effects go away on their own as the body adapts to the medicines.

Common side effects from anti-HIV drugs include:

 

Changes in how fat is distributed around the body (lipodystrophy)
Damage to organs, especially the liver and kidneys, which are responsible for how the body metabolizes energy and drugs and filtering out toxins from the body
High blood sugar
High cholesterol levels
Lactic acidosis, which is a condition involving the energy producing elements of cells

 

Drug Interactions

Because HAART involves taking several drugs, and because a person may be taking drugs for other infections at the same time, there is a risk of the various drugs interacting badly with each other.

This doesn’t mean that the drugs shouldn’t be taken. It does mean that adjustments sometimes need to made to the therapy plan. Dosages may need to be changed to adapt to these interactions. It’s important to tell all you health care providers all the drugs you are taking to prevent drug interactions as much as possible.

Drug Resistance

One of the concerns about anti-HIV therapy over the long term is the virus’s ability to change (mutate) so it is no longer affected by an anti-HIV drug. This is called drug resistance.

Often when drug resistance happens with one anti-HIV drug, the virus will resist all drugs in that class of anti-HIV drug. This is known as cross-resistance. Drug resistance is more likely to occur with some classes of anti-HIV drugs than others.

For this reason, antiretroviral therapy usually includes drugs from several different classes. If the virus can resist one drug, it can still be held in check by the other drugs from other classes. If resistance develops, a doctor may change the drugs being used.

In some cases, it’s possible to measure whether a person with HIV will be likely to resist a specific drug. This can sometimes be helpful in making treatment decisions.

Ongoing Monitoring During Treatment

Anyone with HIV will need to have tests to monitor his or her condition over time. These monitoring tests check for CD4 cell count levels, viral load and blood levels of various chemicals and enzymes that measure the body’s response to anti-HIV therapy.

It is important to get these tests as your doctor recommends them. They help keep the virus under control and avoid the more significant side effects of anti-HIV treatment.

During antiretroviral therapy, the goal is to get the viral load so low it cannot be detected by a blood test. Viral load tests today measure as few as 20 copies of the virus.

There are several different viral load tests. Some consistently report higher viral loads than others. It’s important to have tests done at the same lab and using the same test, so that results are consistent.

Living with HIV

Life Changes After HIV/AIDS

There’s no question that having HIV changes a person’s life, habits and relationships. With the antiretroviral therapy available today, however, a person who is HIV positive can live well for many years. Research is ongoing for new and better therapies and potentially a cure for HIV/AIDS in the meantime.

Knowing that you are HIV positive, gives you power that not knowing doesn’t. It gives you the power to seek treatment, to manage the health issues you can control and to protect the people you love.

Here are some suggestions for taking care of yourself if you are HIV positive:

Protect Your Health

Because HIV damages the immune system, it is harder for your body to fight off infections. This makes it that much more important to safeguard your health and keep your body strong. Some ways you can do this are to:

 

Eat properly, even when you may not have an appetite or it seems like too much trouble to prepare food.
Get enough rest
Get regular exercise
Avoid alcohol
Avoid smoking
Don’t use illicit drugs
Reduce stress. This can include yoga, meditation, spiritual activities or hobbies you enjoy.
Get regular exercise

 

Get informed

The more you know about HIV/AIDS and the drugs that are used to treat it, the better able you will be to make decisions. You’ll be able to spot potential problems with side effects, drug interactions or opportunistic infections before they cause trouble.

Take an active role in your own health care.

Having HIV gives you a new relationship with your doctor. You will need to come in for tests and visits more often than a healthy person does. HIV disease and treatment is complex. You need to work in partnership with your doctors and other health care providers to make sure that treatment is as effective as possible. Find a doctor experienced in treating HIV whom you can trust.

As a patient, it’s up to you to keep all your medical appoints, take medicines as your doctor prescribes them and report any effects from your medicines.

If You Are a Woman With HIV

Women with HIV tend to follow the same progression as men do. Treatment for HIV is virtually the same for men and women.

However, women with HIV have some special issues they should be aware of:

 

Some anti-retrovirals make birth control pills less effective. This means that a woman with HIV could be at greater risk of becoming pregnant – even if she is taking birth control pills.

There hasn’t lot of studies on the effect of anti-retrovirals on pregnant women and their unborn babies. If you are on anti-retroviral therapy and are pregnant or plan to become pregnant, you should talk to your doctor.

You are at greater risk of getting the human papilloma virus (HPV), which in turn can put you at greater risk of developing cervical cancer. You should have regular Pap tests. Your doctor may recommend a test for HPV as well.

The chance of a pregnant woman with untreated HIV passing the virus to her baby is about one in four – 25%. If that woman is getting treatment, the risk of passing the virus to the baby drops to 2%.

When a baby whose mother is HIV positive is born, he or she will need to be tested for HIV and given medicine to prevent HIV infection and other diseases such as PCP.

An HIV-positive mother should not breast feed her baby. HIV infection can be passed to the baby in the milk.

Living with a Partner who is HIV-Positive

If you have a partner who has HIV, you should take care to avoid contact with that person’s blood, semen, vaginal fluid or breast milk. If blood is visible in any body fluid, wear latex, vinyl or nitrile deposable gloves when cleaning up. Hands should be washed with soap and water after taking off gloves when a spill has been cleaned up.

Because other germs can be passed through urine or feces, you should also avoid contact with the urine or feces of a person with HIV.

A freshly mixed solution of chlorine bleach and water (a quarter cup of bleach for every gallon of water) can be used to clean up areas or items contaminated with blood or bodily fluids.

Household items like sports equipment, phones, dishes, food, clothes, bathrooms or swimming pools can be shared with people who have HIV without risk of infection.

You should avoid:

 

Sharing sex toys

Sharing drug needles or the works used to prepare for an injection.

Sharing razors or toothbrushes

Having unsafe sex. Even if both partners have HIV, safe sex should be practiced. Not doing this makes treating HIV harder. It also increases the risk of other infections, including other STDs and opportunistic infections.

Telling Others

Telling Others You Have HIV

Knowing who to tell when you learn that you have HIV can be a challenge. You may not feel like telling anyone. On the other hand, letting the right people know can help you feel better. You won’t have to keep secrets from those close to you. You’ll be able to talk about what’s in your mind and important to you.

It’s extremely important that you:

 

Tell anyone with whom you have had sex. This can be difficult. It’s essential that they be told so they can be tested and get treatment, if necessary. Knowing if they have HIV can help them from spreading it to others.
Tell anyone you plan to have sex with. Practicing safe sex will help protect your health and that of any partners. In some states, not telling a sexual partner you have HIV before having sex is a felony.
Tell your doctor and dentist. This helps them give you the right kind of care. As medical professionals, they have an obligation to keep this information private and confidential. A doctor or dentist cannot refuse to treat you because you have HIV.

 

It can be difficult to tell others. Some people may not be well informed about HIV. They may find it hard to accept that you have this disease. Some people may end their friendship with you or reject you in a dating situation. Often, you won’t know how someone will respond until you tell him or her.

You don’t necessarily have to tell someone your HIV status right away. You may want to see how a relationship unfolds. The closer a relationship gets and the more time that passes, the harder it can be to talk about it sometimes.

Whatever happens, accept the reaction. You can’t control how others deal with the news. Their reaction isn’t a reflection on you – it’s a reflection of them.

You don’t have to tell everyone. You can take time to think about what you want. As you consider telling others about your status, you might want to think about:

 

Why do you want to tell them? Are you looking for something from them?
How can you tell them that might make it easier? Would having articles, websites or hotlines to leave with the person you’re telling be helpful to them?
How might they react to the news? What would be the best scenario? The worst? People can have a wide range of reactions to news like this.
How much do you want to tell them? Some people may ask how you came to be infected with HIV. It’s up to you to decide how much you want to say.
Getting support from others who have had to face similar situations.

Important questions

 
  • Do you know of any support groups that might work for you?
  • How can you get help paying for your health care and prescriptions?
  • How’s the relationship with your doctor? Do you work well together?
  • Do you see an HIV-experienced doctor?
  • What resources do you use to learn about HIV?
  • Have you thought about taking HIV meds yet?
  • What types of support have worked for you before?
  • Is there anything to be concerned about now that you’ve gotten a full physical and test results?
  • Do you know of a helpful case manager or benefits counselor?
  • Are you worried about people finding out your status?
  • Have you told anyone about your HIV status? How did that go?
  • What things can you do to reduce stress?

    Checklist for getting started

    • I’ve found support people, such as a social worker or benefits counselor, who can help me find local services or care.
    • I’ve found a doctor who’s experienced in treating HIV.
    • I know a doctor to go to for my first appointment.
    • I’ve made my first appointment.
    • I’ve found other providers, like a dentist or gynecologist, who understand how to treat people with HIV.
    • I’ve written a list of questions for my first doctor visit.
    • I’ve considered telling others about my status and have made a plan for how to do it.
    • I’ve considered my emotional support needs and will seek help.
    • I know how I’ll pay for my health care, meds and tests.
    • I talked to my doctor about the vaccines that I may need.
    • I’ve talked to my doctor about the screenings I should get, such as hepatitis B and C, cervical and anal Pap smears.
    • My first results are: ____ CD4s, ____ viral load.
    • My second results are: ____ CD4s, ____ viral load.
    • I know what these results mean.
    • I’ve talked to people I trust about how to treat HIV.
    • I know what I need to do to get ready for making decisions about treatment.
    • If I have questions and my doctor’s not available, I can call ________________ or _______________.

    Online resources that may help

     

     

     

     

     

    RESOURCES FOR HIV CARE

     

    RESOURCES FOR WOMEN

     

        Project Inform

     

        The Well Project

     

        California AIDS Infoline

     

        Three Poz Gals

     

        ASO Finder

     

        WORLD

     

        CDC NPIN

     

        Women Alive

     

        Poz ASO Directory

     

         

     

        AAHIVM Dr Directory

     

    CONNECTING WITH POSITIVES

     

        GLMA Dr Directory

     

        HIV+ Bulletin Boards

     

        HealthHIV

     

        Strength In Numbers

     

        HIVMA Dr Directory

     

        Yahoo Support Groups

     

        State AIDS Hotlines

     

     

     

         

     

     

     

    INSURANCE PROGRAMS

     

    PEOPLE OF COLOR

     

        Centers for Medicaid &
        Medicare Services

     

        Asian/Pacific Islander
        Wellness Project

     

        The Access Project

     

        Black AIDS Institute

     

        Health Care.gov

     

        Latino Commission on AIDS

     

         

     

        National Native American
        AIDS Prevention Center

     
     

     
    Download booklets from Project Inform that contain more detailed information. 
    Descarga libros informativos preparados por Project Inform.
     

     
    Project Inform HIV Health InfoLine (800) 822-7422
     

    HIV RESOURCES

     

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