Content Overview 
- Summary
- Be a person living with HIV - not one dying of it.
- Commit yourself to doing everything you can to keep the virus in check.
- Look for a doctor who is a specialist with a large HIV practice who is connected with a quality hospital. Learn how to maximize your time with doctors.
- HIV. Basics
- If lab or other tests are unexpectedly bad or good, ask for them to be done again - preferably by a different lab.
- Decide whether to start treatment. If so, choose a treatment that fits your life.
- Once you choose a treatment, follow the prescribed regimen. 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. If needed, cutting edge treatments are available through clinical trials.
- Decide who to tell about your HIV status, and when.
- Tell every doctor and other medical professional about your HIV status and drugs.
- Think of family and friends as part of your health care team. Ask for help when you need it. Family roles may change as your needs change.
- Share your emotions. Seek someone who is going through the same thing you are. Consider joining a support group.
- Examine 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 insurance, do what you can to get it. You still can.
- Pay attention to your financial basics. Start improving your financial resources. Do what you can to get rid of or minimize existing debt. Refine your investment strategy. Keep track of medical expenses.
- When debt is under control, start working on your goals.
- If you work: Learn how to navigate the potential mine field.
- If you are not able to work, learn the best way to apply for disability income benefits. If you receive a disability benefit, learn how to keep it.
- If you are returning to work or changing jobs, a new employer cannot ask about your health condition.
- Self employed and business owners
- Be sure your legal affairs are in order, including Advance Care Directives. HIV only makes this need more urgent. It will help you feel in control.
- Learn about the HIV resources in your community.
- Drugs do not work in a vacuum. Live a healthy lifestyle. It helps make drugs and other treatments most effective.
- If you have a pet, learn how to live with it safely. If you don't have a pet, consider getting one. A pet is good for your health.
- 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.
- Watch for depression. Depression, and all other side effects, can be treated.
- Learn About Other Diseases That Can Show Up When Living With HIV, How To Help Prevent Them And Symptoms To Watch For.
Living With HIV
Look for a doctor who is a specialist with a large HIV practice who is connected with a quality hospital. 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 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.
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. Since there is currently no cure for HIV, assume you will be seeing your HIV doctor for a long time.
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. Keep in mind that your doctor will be your partner in your health care.
We recommend that you consider the hospital with which your doctor is connected because you may need hospitalization down the line. If so, you want a hospital that is high quality and used to treating people with HIV.
One way to find a doctor who specializes in HIV is to type in your zip code in: www.hivtreatmentispower.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 your doctors by taking the following steps. Taking these steps will also help you feel in control.
- Buy a 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.
- Buy a fax machine or other inexpensive mechanism which allows you to receive and send lab and medical reports.
- Start keeping a symptoms diary.
- Create a list of medications and keep it up to date. (Survivorship A to Z provides an easy chart that allows you to store your list and print it whenever you need it.)
Other diseases
Research indicates that people with HIV have a greater risk of getting other diseases such as lung cancer, heart attacks, and strokes. It is helpful to remind your HIV doctor to keep a focus on the whole person, not just suppressing the virus. Doctors can misdiagnose a situation by narrowing their focus to HIV and not noticing that symptoms can point to another health situation.
Smoothing bumps in the road
If your relationship with your doctor gets out of sync, there are steps to take to help smooth the bumps. For instance, meet with your doctor and let him know what you are unhappy about. Offer solutions if possible.
Switching doctors
If it isn’t working out with your doctor, switch to another one. We don’t suggest that you change doctors lightly. However, as things stand now, you will be working with your HIV specialist for a long time.
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
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