Managing Your Appointments
HIV is a treatable condition. If you are diagnosed early, get on antiretroviral therapy (ART), and adhere to your medication, you can stay healthy, live a normal life span, and reduce the chances of transmitting HIV to others. Part of staying healthy is seeing your HIV care provider regularly so that he or she can track your progress and make sure your HIV treatment is working for you.
Your HIV care provider might be a doctor, nurse practitioner, or physician assistant. Some people living with HIV go to an HIV clinic; others see an HIV specialist at a community health center, Veterans Affairs clinic, or other health clinic; and some people see their provider in a private practice.
In addition to seeing your HIV care provider, you may need to see other health care practitioners, including dentists, nurses, case managers, social workers, psychiatrists/psychologists, pharmacists and medical specialists. This may mean juggling multiple appointments, but it is all part of staying healthy. You can help make this easier by preparing a plan for yourself.
Before Your Visit
For many people living with HIV, appointments with their HIV care provider become a routine part of their life. These tips may help you better prepare for your visits to your HIV care provider and get more out of them:
- Start with a list or a notebook. Write down any questions you have before you go. (The Department of Veterans Affairs offers a useful list of sample questions you can bring with you.)
- Make a list of your health and life goals so that you can talk about them with your HIV provider and how she/he can help you reach them.
- Make a list of any symptoms or problems you are experiencing that you want to talk to your provider about.
- Bring a list of all the HIV and non-HIV medications that you are taking (or the medications themselves), including over-the-counter medications, vitamins, or supplements. Include a list of any HIV medications you may have taken in the past and any problems you had when taking them.
- Bring along a copy of your medical records if you are seeing a new provider who does not already have them. You have the right to access your medical records and having copies of your records can help you keep track of your lab results, prescriptions, and other health information. It can also help your new provider have a better understanding of your health history. For more details on this, see the Information Is Powerful Medicine campaign site.
- Be prepared to talk about any changes in your living situation, relationships, insurance, or employment that may affect your ability to keep up with your HIV appointments and treatment or to take care of yourself. Your provider may be able to connect you with resources or services that may assist you.
- Be on time. Most healthcare providers have full appointment schedules—if you are late, you throw the schedule off for everyone who comes after you. If you are late, there is a chance your provider will not be able to see you the same day.
During Your Visit
- If your provider wants to run some lab tests during your visit, make sure you understand what the lab tests are for and what your provider will do with the results. If you don't understand, ask your provider to explain it in everyday terms. Typically, you will be asked to give a sample (blood, urine) during your visit and your provider’s office will call you with your results in a few days. Keep track of your results and call your provider back if you have any questions.
- Be honest. Your provider isn't there to judge you, but to make decisions with you based on your particular circumstances. Talk about any HIV medication doses you have missed. Tell your provider about your sexual or alcohol/drug use history. These behaviors can put you at risk of developing drug resistance and getting other sexually transmitted infections (STIs) as well as hepatitis. Your provider will work with you to develop strategies to keep you as healthy as possible.
- Describe any side effects you may be having from your HIV medications. Your provider will want to know how the HIV medications are affecting your body in order to work with you to solve any problems and find the right combination of medications for you.
- Ask your provider about your next visit and what you should bring to that appointment.
- Ask for a list of your upcoming appointments when you check out. Work with your case manager, if you have one, to develop a system to help you remember your appointments, such as a calendar, app, or text/e-mail reminders.
It’s important for you to be an active participant in your own health care and it’s your right to ask questions. You may need to direct your questions to different people, depending on what you need/want to know:
- HIV care providers (doctors, nurse practitioners, physician assistants) can answer specific questions about:
- Your prognosis (how your HIV disease is affecting your body)
- How to manage any symptoms you may be experiencing
- Medication issues, including medication changes, new medications, and how the HIV medications may interact with other medications you take.
- Sexual health issues, including questions about any sexual symptoms you may be having, and how you can prevent or treat STIs, and how you can prevent transmitting HIV to your partner(s).
- Family planning considerations, including your goals; birth control options for you and/or your partner, if relevant; your options for having children should you wish to do so; and, if you are an HIV-positive woman who is pregnant or considering getting pregnant, how you can reduce the risk of transmitting HIV to your baby
- Substance use issues, including how alcohol/drug use can affect your HIV treatment and overall health, and whether you should be referred for substance abuse treatment
- Mental health issues, including questions about any mental health symptoms you may be having, and whether you should be referred for mental health treatment
- Referrals for other medical issues you may be experiencing
- The meaning of lab test results
- The need for surgical procedures, if relevant
- Medication adherence strategies (tips for keeping up with your medication and ensuring you take it as scheduled and exactly as prescribed)
- Any clinical trials or research studies that may be relevant for you
- Nurses and case managers often have more time to answer questions about what you discuss with your provider, particularly around:
- Understanding your HIV treatment plan, including how many pills of each medicine you should take; when to take each medicine; how to take each medicine (for example, with or without food); and how to store each medicine
- Understanding possible side effects from your HIV medication and what you should do if you experience them
- Challenges you may have in taking your medications and/or keeping your medical appointments, and strategies for overcoming these challenges
- Resources to help you better understand lab reports, tests, and procedures
- Mental health and/or substance abuse treatment, housing assistance, food assistance, and other resources that exist in your community
- Insurance and pharmacy benefits, and other aspects of paying for care (for more on this, see Addressing the Cost of Care)
- Understanding other medical conditions you may have
- How to quit smoking and resources that are available to assist you
Dental visits are an extremely important part of your care when living with HIV. Many signs of HIV infection can begin in the mouth and throat, and people with HIV are more likely to develop some serious dental problems. For these reasons, it is important to see a dentist regularly.
Tips for your dental visit:
- Make sure you have routine dental visits for cleaning and check-ups. Preventing problems before they occur is always the best approach.
- Tell your dentist you have HIV. That’s not because your dentist will need to take additional precautions—all healthcare professionals use "universal precautions" to prevent the transmission of bloodborne diseases to patients and vice versa. Rather, it will help the dentist know to look for particular oral health problems that you might be at risk for.
- Don’t wait for problems in your mouth to get out of hand. When you notice something wrong (such as tooth pain or a mouth sore), call your dentist right away.
- Be on time for your dental visit. Try not to miss your appointment, if you can help it—and if you can’t, reschedule it ASAP.
- Keep a record of your dental visits, just like you do with your visits to your HIV care provider. Keep track of when you had dental X-rays (and what was X-rayed), any procedures or treatments you had, and when your next visit is scheduled.
- Bring copies of your recent test results and lab reports. Your dentist may need to have information about your CD4 count and platelet count to know how best to treat your dental issue. Also bring a list of any medications you are currently taking, as your dentist needs to know what you are taking to avoid giving you other medications which may have bad interactions.
- Know your rights: Any dentist licensed in the United States should be able to provide at least basic dental care to people living with HIV. If you sense there is discrimination towards you based on your HIV status, there are resources to help you with this (For more information visit this page.)
For more information, see our Oral Health Issues page.
Frequently Asked Questions
If I am already seeing an HIV provider, do I also need to see a general health care provider?
Usually, your provider will see you for HIV and all of your health care needs and then provide a referral to a specialist if needed. Talk to your HIV provider and ask if this is how he/she will handle your care. Many health centers serve as “patient-centered medical homes” that provide coordinated care and treat the many needs of patients all at once. Ask your provider if this is available. Learn more about HRSA’s Health Center Program.
It has been a while since I saw my HIV care provider, and I am worried that s/he will be upset with me. What should I do?
While staying engaged in care is the best way to ensure healthy outcomes, sometimes people miss appointments or have trouble sticking to their HIV treatment plan for a whole host of reasons. HIV providers are usually concerned when their patients stop going to appointments and happy to see them return to care. If it has been a while since your last HIV medical appointment, you can schedule an appointment with your previous HIV provider or schedule an appointment with a new HIV provider. A new provider can help you ask for your health records to be transferred over from your previous provider. Whether you change providers or not, it may be a good idea to discuss with your provider the reasons you stopped going to your HIV medical appointments in the past so that she/he can help you avoid or address these reasons in the future.
Last revised: 04/16/2015