Content Overview 
- Overview
- Take time to breathe. You are a person living with HIV - not a person dying of it. Whatever happened, happened. There is no use dwelling on it.
- HIV Basics
- Commit yourself to doing everything you can to keep the virus in check. Don't make any major decisions that you don't have to make right now.
- Look for a doctor with a large HIV practice who is connected with a quality hospital, in a different locale if necessary. Learn how to maximize your time with doctors.
- Decide whether to start treatment. If so, choose a treatment that fits your life. If you have any question about which treatment to take, get a second opinion.
- Learn to be wise about purchasing, living with, storing and disposing of drugs. Free drugs may be available.
- Non-Western treatments should be complementary, not instead of Western treatments. Cutting edge treatments are available if needed through clinical trials.
- Decide who to tell about your HIV status, and when. Your answers may be different for family and friends, children and work. If not before, tell your children about your diagnosis if you have symptoms.
- Think of family and friends as part of your health care team. Ask for help when you need it.
- Share your emotions. Seek someone to talk with who is going through the same thing you are. Consider joining a support group.
- Start examining your insurance and financial situation to determine how to pay for medical care and drugs or access them for free if you don't have the resources. If you don't have health coverage, get it. You still can.
- Pay attention to your financial basics such as paying your rent on mortgage on time. Keep track of medical expenses. They may be deductible.
- Don't go on a spending spree.
- If you work, learn about your legal rights and benefits, consider who to tell or not, negotiate an accommodation if you need one. Look for an advisor. If you are unable to work, learn how to apply for SSDI/SSI.
- Start getting your legal affairs in order - not because you're going to die from HIV but because the diagnosis can be a trigger to action. It will help you feel in control and help keep you busy.
- Learn about the HIV resources in your community.
- Drugs do not work in a vacuum. Start to think of the food you eat, the exercise you get, rest/sleep and even proper care of your mouth as steps you can take to make drugs and treatments most effective.
- Although a major source of transmission of HIV is through bodily contact, you can still be physically intimate with people. Learn how to avoid transmitting HIV to other people.
- If you have a pet, learn what you need to know to keep both of you healthy.
- Watch for mental conditions that affect your life. Depression, anxiety and other emotional side effects, can be treated.
Newly Diagnosed With HIV
Look for a doctor with a large HIV practice who is connected with a quality hospital, in a different locale if necessary. Learn how to maximize your time with doctors.
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Choosing an HIV Doctor
Even if you do not need treatment at this point, find the best doctor available to you who has experience treating people with HIV. In many instances, treating HIV is more of an art than a science.
The odds are you don't have to make decisions immediately. This applies to everything from locating a specialist in your condition to deciding whether to take a drug or treatment. Ask the doctor who diagnosed you what symptoms would indicate that a decision has to be made more quickly than he or she indicated, or when to call him/her, or go to the Emergency Room.
The more people with HIV the doctor sees on a regular basis, the more likely he or she is to be on top of the latest treatments, and to have an instinctive awareness of what is going on in patients with HIV.
If no such doctor is available locally, consider traveling to a city where such doctors are available. You can then do your treatment at home and be monitored by your local medical practitioner.
One way to find a doctor who specializes in HIV is to type your zip code in: www.hivtreatmentispower.com
As you will see from our tool to help you choose a doctor, we leave it up to you to determine what else you think is important in a doctor. With HIV, we also suggest that you find a doctor you feel comfortable with - including discussing sensitive subjects. For instance, you need to be honest with your HIV doctor about your sexual practices, drug use, and adherence to any agreed to drug regimen.
Your doctor will be your partner in your health care.
Since there is currently no cure for HIV, assume you will be seeing your HIV doctor for a long time.
To help find a doctor specializing in HIV/AIDS, consider the following:
- Ask another person with HIV/AIDS
- Contact your local AIDS Service Organization. For a list of organizations, see: POZ.com
- Look at such sites as LifeScript.com
NOTE: If your HIV doctor is a specialist in internal medicine (basically a family practice), he or she can also be your primary care physician. If your HIV doctor is not your primary care physician, be sure he or she keeps your primary doctor to date after each visit.
Maximizing your time with a doctor
Start preparing to maximize your limited time with doctors by taking the following steps. Taking these steps will also help you feel in control.
- If you don't have a smart phone with a recording feature, consider buying an inexpensive tape or digital recorder so you can record your sessions and replay them later.
- Locate a person to go with you to important doctor visits to help ask questions and listen. Sometimes emotions can make it difficult to absorb everything that is said. To learn about patient advocates (which is what a friend who goes with you is called), click here.
- Buy a scanner or fax machine which allows you to receive and send lab and medical reports.
- Start keeping a symptoms diary. It can become a pain in the butt, but it well worth it for your health.
- Create a list of medications, keep it up to date, and keep a copy in your wallet. (Survivorship A to Z provides an easy chart that allows you to store your list and print it whenever you need it.)
For more information, see:
- Doctors: Choosing, Keeping, Switching, Paying For
- How To Work Effectively With Your Doctor
- Hospitals
- Hospitals 101 (including how to stay safe in one, and maximizing your stay)
- How To Choose A Hospital