Cuídate: Living With HIV/AIDS

Cuídate means "take care of yourself." While this pamphlet was written for the latino community, the advice here is good for everyone, Read On… A Spanish language version of this page can be found at Cuídate: Viviendo con VIH/SIDA

Introduction

If you are HIV positive, you probably have a lot of questions. This is normal. HIV is a complicated disease that requires that you be informed, be aware of how your own body is reacting, and sustain a partnership with your medical provider and loved ones. Why is HIV so complicated? Why isn’t it just like every other disease? HIV/AIDS can be similar to other chronic diseases, like diabetes and heart disease. The challenge is managing the disease so you can lead a normal life. Managing HIV requires that you:

  • Learn as much about the disease as possible so you know your options
  • Form a strong relationship with your entire medical team (doctors, nurses, physician assistants, home health care aides, etc.) so that you can become a partner in your care and participate in making treatment decisions
  • Assert yourself. Never be afraid to ask your medical team questions about words, tests, or medications you do not understand and learn to share how you feel regardless of whether you think they are HIV related or not
  • Know yourself. It is vital that you know what kinds of medical treatment you are capable of following and what factors may interfere with treatment.
  • Build a care team. Involve loved ones and friends, and keep them informed about the specifics of your health so they can assist and support you in implementing your care decisions

The purpose of this brochure is to help you ask questions about your care. As with any chronic disease, HIV requires that you “own” your decisions about care and treatment. Without this personal investment and support it will be much harder to manage this complicated disease. While there is no cure for HIV infection, it is a disease that can often be controlled.

How Do I Find A Good Medical Team?

A good medical team for the treatment of HIV/AIDS includes an experienced doctor with expertise in treating HIV-positive patients who has many patients with this disease. Experience is important. The more HIV-positive patients your doctor treats, the more likely she or he will be familiar with the treatments available and needed laboratory tests.

But even with these qualifications, a particular medical team might not be suitable for your care. If you are Spanish-language dominant and your doctor does not speak Spanish or access interpreter services, you may not be able to communicate your symptoms and ask questions. Without language resources, patients are less likely to adhere to treatment decisions, thereby defeating the whole purpose of medical care. Then there is the doctor’s familiarity with your economic, home life, and cultural realities.

It may be difficult to find the perfect medical team. The key questions are: Is your condition improving? Does your doctor listen to you? Do your questions get answered? Are you comfortable with your doctor and his or her nursing and other staff. Is your doctor affiliated with a good hospital? Is medical advice provided in Spanish if needed? These and other questions are common, but often overlooked.

How Often Should I See My Medical Team?

As with any chronic disease, maintaining a regular schedule of clinic or medical office visits is absolutely essential.

Based on your current health, you and your medical providers should agree on regular visits and blood tests. The blood tests will help your health team determine whether you should start, maintain, change, or continue with a set of medications. Your doctor may check for sexually transmitted diseases and measure your cholesterol level, liver function, glucose levels, and other important variables.

Your doctor may change your schedule and ask that you come in more often. This may be inconvenient, but nothing is more important to your health than maintaining a good doctor-patient relationship. Your doctor may send you for additional medical tests because he or she is checking for other conditions.

Keep track of your lab results. You can begin to get a picture of your progress over time and learn more about the meaning of different blood measures. It is just as common with other chronic diseases for patients to track key blood measures.

Starting, Maintaining, Changing, or Stopping Medications

Starting: The United States Public Health Service in consultation with AIDS experts from around the country recommend that you begin taking medications to control HIV when your CD4 count is low and viral load is high. The actual recommended numbers are constantly changing and your doctor may choose to recommend that you begin taking antiretrovirals even if you do not match these guidelines.

Many doctors perform a drug resistance test before commencing medications. This test will tell your doctor which drugs you may already be resistant to even though you may have never taken medicines for HIV. It is possible that the strain of HIV that you were infected with is resistant to some medications. Drug resistance is complicated and should be discussed with your doctor.

Your medical provider will make a recommendation about what combination of medicines you should take that will have the best chance of success. Success depends on how ready you are to adhere to the schedule for taking the medications and how effective the medications are. Because you are the one who must take the medications with near perfect adherence, your doctor will collaborate with you to decide the appropriate time to begin therapy and the drugs to include in the first regimen.

Maintaining: Adherence is critical to successful treatment. Adherence means taking your medications at the prescribed time each day and at the recommended dose. This is critical to maintaining your health. If you have trouble taking your medications on schedule, you should enlist the help of your medical providers. Some men and women with HIV infection have integrated their family and loved ones into their adherence efforts so they have a team of support.

Changing: Sometimes HIV medications cease to have the effect of lowering the amount of HIV or increasing the strength of your immune system. Sometimes the side effects can be very serious. Your doctor may decide it is time to change your medical regimen to improve the benefit from the medications and/or lessen the chances of side effects or serious injury. Your doctor will probably do a blood test to see which drugs you are resistant to before making such a change.

Stopping: Some people feel that they want a “holiday” from their medications. You must consult with your doctor before stopping any medication. Your doctor will evaluate your medical status before making a recommendation.

Side Effects

All medications have side effects – some more than others. Learn to recognize side effects. Ask your doctor. “What are the side effects of the medicine I take?” If you know side effects that might occur beforehand, you will be better prepared. Share any side effects with your health care team. Only you can decide what side effects you can live with. Will the side effects go away with time? Are the side effects serious? What can you do to manage such side effects as diarrhea, nausea, diabetes, high cholesterol, etc? There may be things your doctor can do to lessen some of the side effects of your medications.

Family, Friends and Faith

In the Latino community, the extended family can be a source of strength and support. So if you are ready it is best to be open about your condition to those people who need to know in order for you to sustain your health. Domestic violence, rejection and ignorance by others are all very real factors that may interfere with your being open. It is important to come to grips with these things before disclosing your HIV status.

Many persons find hope and strength in their faith and in religious communities. In many areas of the country, faith communities have led the way in offering compassion and help to persons with HIV/AIDS.

In your daily life you probably have many other things to worry about besides HIV, such as keeping food on the table, paying rent, seeing that children are educated, holding a job, and immigration status. These are the stresses that are increased by HIV. If you don’t take care of yourself, you may not be around for all the other parts of life that are so important to you. Integrating your HIV care and care for yourself may require a shift in your priorities. Ultimately everyone wins if you can integrate everything – the needs of your loved ones, your work, and all the other things you care about.


LCOA, dedicated to improving health promotion to the Latino Community.
Visit us at www.latinoaids.org


Merck & Co., Inc., provided funding and content input for this brochure.
Visit us at www.merck.com

The content of this page was taken from the brochure “Cuídate: Living with HIV/AIDS” edited by the Latino Commission on AIDS in conjunction with Merck & Co., Inc. New York, June 2005.