July 6th, 2011 admin
A crucial part of living well is taking control. A crucial part of taking control, for some people, is learning to deal with the medical system. The medical system is complicated. The best advice we can give both the person with HIV infection and the caregiver is to ask questions. One reason that people don’t ask questions is because they feel intimidated. Medical people often don’t understand they are intimidating. If you don’t ask them questions, they assume you already know the answers, not that you’re afraid to ask. Another reason people don’t ask questions is because they worry about offending their physicians. Any good physician will not be offended by a question. Neither of these is a good reason not to find out what you want to know. Ask how to get medical care at night and on weekends. Get pushy if you are in pain; pain is usually unnecessary. Ask what’s happening with new treatments. Ask for advice on alternative treatments—treatments like acupuncture or untested drugs. Ask where you are in the course of the infection. Ask what tests you are being given, what those tests detect, what the alternatives to the tests are. Ask for a second opinion on a diagnosis or an interpretation of a test. People worry especially about asking for second opinions; but this is a reasonable and prudent request, and physicians are not offended by it. In general, you have a right to know about treatments, medications, and procedures. It is a good idea to write questions down before visiting the doctor: most people forget some or most of what they want to ask. Questions about medical care are best addressed to your doctors. Questions about the medical system and resources for medical care in general are best addressed to a social worker.*240\191\2*
Posted in HIV | Comments Off
June 14th, 2011 admin
The major change in mental abilities is an increase in forgetfulness, a loss of memory. People often have problems remembering only the recent past, not the distant past, and the problem is usually more annoying than profound. People nonetheless find it distressing. They can remember childhood experiences but not what they had for breakfast. They have trouble telling their doctors their recent histories. They forget why they entered a room, or where they parked the car, or what they wanted at the grocery store, or what they did that day. They forget appointments and become confused about time or place. People deal with memory problems by finding ways around them. Dean Lombard, who kept forgetting to take his medication and to eat crackers before he took it, bought an inexpensive pillbox equipped with a beeper that beeped when he should eat, and then again when he was to take the medicine. Other people put their medications into pillboxes that are organized by days of the week. Lisa Pratt repeated anything she wanted her husband to remember several times over a period of days, and that seemed to help him retain it. Some people keep lists, in notebooks or in pocket calendars, to remind themselves of calls they want to make or dates to keep or things to ask the doctor. Dean bought a memo book that fit in his shirt pocket. “I always carry it,” he said. “I know enough to write something down immediately if I want to remember it: pick up the parts at Sears, pick up my mother. The minute I know, I write it down.” In general, people try to limit the number of things they carry in their heads: “I don’t deal with twenty things at once,” said Dean.*145\191\2*
Posted in HIV | Comments Off
May 15th, 2011 admin
People with HIV infection do not usually have problems with their eyes, and when they do, the problems are often the usual ones that accompany the aging process. But there are some eye problems that indicate serious complications, and a physician must be notified. The most common and serious is cytomegalovirus retinitis. Blurred Vision-Blurred vision, along with several other symptoms and a low CD4 cell count, may indicate an infection of the eye called cytomegalovirus retinitis. Cytomegalovirus (CMV) retinitis-In addition to blurred vision, other symptoms of CMV retinitis can include a blind spot, pain in the eye, and “floaters.” Floaters are spots that float across the line of vision as a result of inflamed cells in the middle of the eye. In many instances the person with CMV retinitis notices no symptoms at all. CMV retinitis is caused by a virus called cytomegalovirus, or CMV, that, like the viruses that cause chickenpox or herpes, infects most people and then remains dormant in the body. Because CMV lives in blood cells, it can circulate to all parts of the body. In this case, CMV has infected the retina, the layer of cells in the back of the eye that, like the film of a camera, is responsible for recording images. The specific symptoms a person has will depend on which area of the retina is affected. CMV retinitis occurs in only 5 to 15 percent of people with HIV infection. It does not occur until the CD4 count is severely lowered. The diagnosis can be made by a physician using an ophthalmoscope, an instrument that permits the physician to see the retina. What part of the retina is infected determines how much vision is lost. On the central part of the retina, where images are focused, a small area of infection can cause complete loss of vision. On the periphery of the retina, a large infection can cause no apparent vision loss. CMV retinitis can occur in one eye or in both eyes. If the infection in one eye is left untreated, it will often affect the other eye as well. If both eyes are infected and left untreated, the usual result is blindness. Loss of sight caused by cytomegalovirus cannot be corrected with glasses. With early treatment, vision can usually be saved before blindness occurs. Treatment is with the antiviral drugs ganciclovir and foscarnet, which slow or stop the progression of the infection. Both drugs are given intravenously, and treatment must continue indefinitely, because the infection recurs when the treatment is stopped.*129\191\2*
Posted in HIV | Comments Off
December 11th, 2010 admin
Many people find dealing with the practical aspects of having HIV infection almost as troublesome as the infection itself. People worry about money; about confidentiality; about dealing with the legal, medical, and social service systems; about writing wills; about removing burdens from those they love; about the possibility of becoming incompetent. Such questions about practical matters are generally best answered by two categories of professionals.
One category is composed of social workers. Social workers are found in most community agencies that deal with HIV infection: mental health centers, state and local social service agencies, AIDS-advocacy organizations, some churches, and virtually all hospitals. Hospital social workers also understand the medical system and can help you navigate it. Their job is usually to help you make plans for the short term, especially plans for leaving the hospital and returning home.
The other category is composed of lawyers. To find a lawyer, check with people you know who have lawyers they trust, with your state’s bar association, or with local AIDS-advocacy agencies. A related group of professionals (these are often lawyers, too) handles complaints about discrimination. They can be found in your state’s human relations or civil rights commission. Check in the telephone book’s yellow or blue pages under the name of your state, or under social service organizations.
*196\191\2*
HIV: PRACTICAL MATTERS-MAKING LEGAL, FINANCIAL, AND MEDICAL DECISIONSMany people find dealing with the practical aspects of having HIV infection almost as troublesome as the infection itself. People worry about money; about confidentiality; about dealing with the legal, medical, and social service systems; about writing wills; about removing burdens from those they love; about the possibility of becoming incompetent. Such questions about practical matters are generally best answered by two categories of professionals. One category is composed of social workers. Social workers are found in most community agencies that deal with HIV infection: mental health centers, state and local social service agencies, AIDS-advocacy organizations, some churches, and virtually all hospitals. Hospital social workers also understand the medical system and can help you navigate it. Their job is usually to help you make plans for the short term, especially plans for leaving the hospital and returning home. The other category is composed of lawyers. To find a lawyer, check with people you know who have lawyers they trust, with your state’s bar association, or with local AIDS-advocacy agencies. A related group of professionals (these are often lawyers, too) handles complaints about discrimination. They can be found in your state’s human relations or civil rights commission. Check in the telephone book’s yellow or blue pages under the name of your state, or under social service organizations.*196\191\2*
Posted in HIV | No Comments »