- - - - -DAY ONE
By Wynn Wagner
You are in the right place if you just found out you have HIV. Yeah, me too. This web page is the beginnings of your Survival Kit. I'm not a doctor or professional counselor I'm just a person with HIV, - - - - -and I've gone through the same thing you're going through.
My plan here is to give you five pointers that I think are Big Deals. Then, I'll show you where you can go get whatever information you
1. Use a specialist. Make sure you find a doctor who specializes in HIV. That's a Big Deal. Studies have shown that your survival depends on you being treated by a doctor who deals with HIV on a daily basis.
Your regular doctor may be great, but you don't need general medicine right now. You need a specialist.
Those who get treated by an HIV specialist live longer. Period.
If you can't afford or locate a doctor, find an HIV/AIDS organization that can help you directly, or help you find public assistance.
2. Be good to yourself. That means eat right and take vitamins, and it means finding somebody to hug you from time to time. It also means stop beating yourself up over being HIV-positive. Oh, okay ... do some self-pity for a day or two, if you want ... but remember to snap out of it.
3. Your best medicines are attitude and knowledge. Find out all you can and be assertive. It's you versus HIV. Doctors and social workers can help, but eventu-ally it's just you and the virus. Your absolute best weapons are knowledge and attitude. Those of us with HIV have gotten a reputation for being well-informed patients.
- - - - It's okay to ask your caregiver (e.g., doctor) questions or to disagree with a treatment strategy. It's okay to be part of the treatment decision process. You need to take charge of your own health. Be assertive or aggressive, if you want that's okay too, because your doctor is your employee.
4. Watch for outdated information. Distrust anything you find on the internet that is older than a few months. - - - -Major advances in treating HIV have occurred recently. Some web sites haven't reflected those changes. You will find the most recent information available here on AEGiS. Additional information is available on the AIDSinfo site.
The current (Feb, 2002) recommendation on treating HIV in adults is:
a. Start treatment when CD4+ T cells drop below 350 cells/mm3 or plasma HIV RNA levels exceed 55,000 copies/mL (by RT-PCR or bDNA assay).
b. Always use a COMBINATION of at least 3 anti-HIV drugs. This strategy is called HAART, which stands for "highly active anti-retroviral therapy." In the popular press, the combination is sometimes called a "drug cocktail." Individual drugs attack the virus in a slightly different way, so doctors have learned to apply a multi-front attack all at once.
Tests are available to see which anti-HIV drugs will work best in your specific case. These are highly suggested but expensive.
5. Take this thing very seriously.. Approach treatment as though it were a life or death situation. Hello! News Flash: HIV is a serious disease.
|H I V IS A SERIOUS DISEASE! |
You may have heard about "treatment failures," where the virus has been able to mutate so drugs are no longer effective. Researchers say the Number One reason this happens is that patients (i.e., you) don't take their meds correctly --
*If you are supposed to take a drug at 9:00AM, just do it. Try not to miss a dose... not even one.
*Make sure you know the rules about taking your particular medications . If you have questions, ask your doctor or the nurse or the pharmacist. Make sure you understand how to take your medications--
****Some drugs require you to take them on an empty stomach.
****Others require you to take them at meals.
****One drug says don't drink grapefruit juice. These dosing rules are not things you can just guess. Who would have guessed that grapefruit lowers the effectiveness of an HIV drug?
****Don't assume your doctor or pharmacist will tell you everything. They won't. In fact, they may leave out some vital piece of information. If you are not clear on how to take your medicines, ask. Write your questions on a piece of paper so you don't forget them.
If you don't want to take a drug because of the nasty side-effects, - - - - call your doctor. There may be other drugs available to you. Until then, just take the drug and deal with the side-effects (unless you have been given special instructions on adverse reactions).
If you miss a dose, you are giving the virus an opportunity to overtake your meds. You need to maintain a high level of all medications in your system. If a level drops, the virus can mutate around your drugs... making them useless. Take your medication schedule seriously!
HIV is a virus. A virus is an organism that has to be inside some other cell in order to multiply.
In the case of HIV, the virus gets inside your T-cells which are part of your immune system.
*The virus gets into more than just T-cells, but T-cells are your biggest concern. *T-cell is sometimes called CD4+. For simplicity, you can treat T-cell and CD4+ as the same thing.
Monitoring Your Health
There are two kinds of tests that see how well you are: "t-cell count" (or "CD4+ count") lets you know how many t-cells you have, and "viral load" shows how much virus is floating around.
You want to get a high t-cell count and a low viral load, but there are treatment options for all combinations of t-cell counts and viral load tests. - - - Doctors and patient-activist groups often recommend you get both tests every three or four months.
Anti-viral treatment attacks the HIV virus in one of two places: (1) keeping the virus out of your healthy t-cells; (2) keeping an infected t-cell from releasing new virus cells.
Other treatment includes boosting your natural immune system so it can fight HIV. This is called "immune modulation." - - -The reason HIV symptoms don't appear for many years is because your immune system does a remarkable job in fighting HIV. Anti-viral drugs are primarily for those whose immune system is overwhelmed by the virus. Other treatment strategies include ways of boosting your immune system's strength, so it can fight HIV longer.
If your t-cells drop too low, your immune system won't be able to fight off diseases. These diseases are called "opportunistic infections."
Those who die of AIDS actually die from one of these opportunistic infections (a.k.a. "O.I."). HIV doesn't kill anybody directly. - - It just weakens the person's immune system.
There is a battery of weapons your doctor will have to prevent and cure these infections.
|HIV doesn't kill|
It just weakens
Note that I said "If your t-cells drop too low...." I did not say "When they drop...." There are things you can do to help keep your t-cell count high. --- Getting smart about HIV is Step One, and you're already on your way to do that.
Hearing you have HIV is like hearing a death sentence. It can ruin your day.
It ruined my whole week.
But I've learned about people who are still alive and healthy and happy 15 years after being diagnosed. - It feels like a death sentence at first, but things will get better. - - Learning about the disease (like you're doing right now) is your best defense. You are doing exactly what you should be doing.
You tested positive. Your test result is a piece of knowledge, and knowing about the disease is a powerful weapon. - Now that you know, you can do something about it.
- - - - -If you are like me, there are several topics you are not ready for sex, for example.
After I tested positive, I couldn't even think about friendships, relationships, and sex but I was sure that I would never have a friend again.
If you start worrying about this stuff in the next few weeks, just remember what I said. It's just your brain playing mind games.
File this away for later: you can make friends again; you can have relationships again; and I am living witness that safe sex can be really hot.
This is one thing we have in common with those who don't have HIV. Everybody gets to die some day. But... You don't have to die today.
That is the one phrase that snapped me out of my HIV-blues.
I've learned to pay attention to today. --Things are better when I concentrate on today. When I get wrapped up in yesterday, it's usually a feeling of regret. When I go off on tomorrow, it's almost always fear.
Picture yourself with one foot on yesterday the other foot on tomorrow.
What's left for today? - - - - - With one foot on yesterday and the other foot on tomorrow, the only thing you can do about today is piss on it.
A positive HIV antibody test is scary news but it's not a death sentence. - - Many people are alive and well 15 years or more after becoming HIV positive. - - - A positive test result is an important medical message that may save or extend your life. - - - - Whether you took the test or not, sooner or later you would have learned of your HIV infection status. If you learn by testing, you have a chance to slow or prevent some of the possible medical consequences. - - -- If you didn't get tested, HIV would announce itself at some point in the form of an infection or damage to your immune system. - - - - - But if you had waited for the disease to announce itself, many of your best medical options would already be lost.
Most testing services provide counselling to help people handle the news. - The real work, however, is up to you. - - - - - - Given the right attitude and the right information, HIV infection can be managed like a chronic illness, - - - one which some people seem able to survive for a long, long time. --Getting informed and taking charge of your health will surely help you make the best of your situation. This document can help you with the things you need to do: - - -
*Developing a strategy for adapting to your new situation.
*Learning more about HIV and how it can affect you.
*Understanding medical tests.
*Finding out about your options for intervention and learn how to use the services of Project Inform.
Reading this paper is a good first step. It's a little long, but it's worth the time. It's about saving your life...
AIDS is the most serious form of an illness caused by a virus called the Human Immunodeficiency Virus (HIV). Although it is well established that HIV is the primary cause of AIDS, it is not fully understood how it does it. In general, the virus attacks or disables the body's immune system. Over time, if the immune system becomes seriously damaged, the body loses the ability to combat a variety of illnesses, called opportunistic infections (OI's ) or conditions. Each new infection further wears down the body's defenses. - - - - These infections and cancers, such as pneumocystis pneumonia (PCP) and Kaposi's sarcoma (KS), are the real killers of people with HIV.
- - This gradual destruction of the immune system, however, doesn't happen the same way in everyone, or at the same pace. In some people, it may not happen at all. In a small percentage of people, infection with - - - - HIV leads to destruction of the immune system very rapidly, in just a few years. - - But others remain well for 10 to 15 years or longer. - - - - - - - - - - On average, most people remain well for about 10 years before experiencing the first serious symptoms.
|Every thought seed sown or allowed to|
fall into the mind,
and to take root there,produces its own.
Good thoughts bear good friut;
bad thoughts bear bad fruit....
Tests which measure the amount of virus in the bloodstream (called "viral load" tests) can generally predict how quickly HIV will damage the immune system. In effect, viral load tests tell you the expected rate of disease progression - - - - the higher the number, the faster the progression. - - - - - - Effective treatments are now available which can greatly reduce the level of virus, thus slowing the rate of disease progression.
Tests which measure the level of a certain type of white blood cell, - - called the CD4+ (CD 4 positive) can measure the decline of immune health. Many scientists feel that the CD4+ test tells you how far you have - - - -lready progressed toward AIDS or AIDS-related infections. Treatment, however, can prevent or delay many of these infections, as well as slow the decline of the immune system.
For long periods, often several years, the body seems to cope effectively with HIV in many people. The number and percentage of CD4+ cells fall, but slowly. During this period, - - most people suffer no obvious ill effects and feel normal. Despite this, most researchers believe that damage is being done to the immune system in this period. Many scientists believe that early intervention during this period may have the greatest impact.
Without treatment, the body slowly loses its ability to fight infections. Some infections, like pneumocystis pneumonia (PCP), become likely when the CD4+ count falls below 200 or 300. Minor infections can occur at counts higher than 300. Other life-threatening infections become more likely when the count falls below 50 or 100. - Once the body loses its ability to fight these infections, it's unclear whether current treatment can restore it.
HIV is a "spectrum" illness: all who are infected have the same disease,- but there are many different stages to it. AIDS is the name given only to the most serious stage of HIV disease. - - - - In the least serious stage, people are HIV seropositive, meaning they have tested positive on the HIV antibody test but have no symptoms of illness. If left untreated, most of those who are infected generally progress along the spectrum toward AIDS.HIV infection sometimes progresses slowly or sometimes quickly.
- - - - - Several long-term studies have researched the rate at which the disease progresses when left untreated. - - Most conclude that about 50% of HIV infected people progress to AIDS within 10 years of infection, - and that about 75% reach AIDS by the 15th year. What all such studies conclude is that HIV is a progressive infection which leads to symptomatic illness in the majority of people over time.
Children born with HIV and people infected through blood transfusion seem to get sick more quickly. - - Studies with women and people with hemophilia are inconclusive about the rate of progression. - - Why people progress at different rates is uncertain. - - It may be due to differences in the strain of virus a person acquires. Others feel it is influenced by genetic differences in people, and still others suspect that life-style factors make a difference.
Reference: Adapted from Centers of Disease Control Fact Sheets February 2004
Compiled and Edited: Deborah Shrira RPH,CMA January 2006