Tuesday, April 3, 2012

The AIDS Alphabet: X, Y, Z

The AIDS Alphabet: X, Y, Z

Now that we've almost reached the end of the AIDS alphabet, let's review all its letters. This is only a snapshot of the larger, more comprehensive AIDS Alphabet, the subject of my upcoming book with the same name.

A is for AIDS, AZT, Atripla, ARV, (AIDS) awareness, abstinence, ART [AntiRetroviral Therapy] (see HAART), amfAR, ADAP, ACT-UP, AIDS museum
AIDS Museum Opening. Seton Hall University, South Orange, NJ, 2006. Photo by Alina Oswald

B is for Bactrim, Buffalo hump, (AIDS related) Blindness, (AIDS) Bracelet

C is for Candidiasis, Cidofovir, crypto, cocktail, CD4, CMV (Cytomegalovirus), Crixivan (see PIs), (AIDS) complacency, (AIDS) Conspiracy theory, (AIDS) Cure

D is for ddI, d4T, (AIDS) Dementia, Drug interaction, Death, Duality of AIDS, December 1st (See World AIDS Day), (AIDS) Denialism

E is for Entry Inhibitors, AIDS education, epidemic, ELISA 

F is for Foscarnet, Fuzeon (see Entry Inhibitors), the Face of AIDS, FDA

G is for Ganciclovir, GRID (Gay Related Immune Deficiency), gay cancer, AIDS-related Gingivitis

H is for HIV, HAART (see ART) [Highly Active AntiRetroviral Therapy], Dr. Ho, Hope

I is for Immunomodulators, Immune System, Infection

J is for (pneumonia) Jiroveci (see PCP)

K is for Kaposi's sarcoma (KS)

L is for (AIDS) Lymphoma, Lazarus effect

M is for (HIV) Mirror test, Mono-therapy, MCV, Maraviroc, Molluscum Contagiosum Virus

N is for NNRTIs, NRTs, Norvir, Neuropathy

O is for Opportunistic Infections (OIs), ozone therapy, Orasure, (AIDS) Origins

P is for PCP [Pneumocystis carinii pneumonia], (AIDS) Pneumonia, PICC (Peripherally Inserted Central Catheter) line, Protease Inhibitors (PIs), Pentamidine, (AIDS) pandemic, (AIDS) prevention

Q is for (AIDS) Quilt

R is for Ryan White CARE Act, Reverse transcriptase, (CMV) Retinitis, Retrovirus, (AIDS Red) Ribbon

S is for SIV, SIDA, Sustiva, symptoms, side-effects, Syndrome, skin cancer, survivor, sunken cheek syndrome, safer sex, SLIM

T is for T-cell, T-cell count, T20 (see Fuzeon), (AIDS) Treatment, Therapy

U is for Until There's A Cure, Urine therapy, Undetectable (VL)

V is for Viral Load (VL), Visual AIDS

Empire State Building in red lights for December 1st, World AIDS Day
Empire State Red Lights on World AIDS Day
W is for (AIDS) Warrior, (AIDS) Walk, Western Blot Test, World AIDS Day

Y is for Yeast infection, (AIDS early) Years and 30 Years of AIDS

X is for X-ray

Z is for Zerit

Journeys Through Darkness: A Biography of AIDS bookmark
Here are a few excerpts from Journeys Through Darkness:A Biography of AIDS, which reflect the last three letters of the AIDS alphabet:

X is for X-ray

By 1991 the number of AIDS-related deaths skyrocketed. Many of Kurt’s friends and people he knew in his community became infected with HIV. But Kurt didn’t really worry. He had been feeling fine and hadn’t been sick at all, so there hadn’t been any reason for him to go to the doctor for his annual physical.  As a matter of fact, Kurt hadn’t been to a doctor in over a decade. He’d been healthy… at least up until the end of October 1991, when he started coughing. It was a persistent cough, exhausting, draining him of energy.
    Not knowing what to make of it, Kurt tried to self-diagnose, thinking he had an allergy. So, he decided to put to good use the health insurance he had through his work and flipped through the provider books with their endless lists of physicians, searching for an allergist. He found one and called his office to make an appointment. A few days later the doctor gave Kurt several shots of different allergens under his skin to determine just what he was allergic to, and then sent him home, advising him to return in a few days.
    Once at home, Kurt started feeling much worse. He went to bed only to wake up in the middle of the night soaked in his own sweat. That’s when he realized that something was seriously wrong with him and it wasn’t allergies. He started to think that whatever was wrong had something to do with HIV. 
    Only a week earlier Kurt had taken his date to a gay bar, where he first noticed an AIDS magazine. He picked it up and flipped through its pages and he came upon a list of various opportunistic infections associated with AIDS. One of them was Pneumocystis carinii pneumonia, or PCP, otherwise known as “the AIDS pneumonia.” Kurt mentioned his suspicion regarding his HIV status, but the other guy brushed him away, saying that Kurt was probably overreacting.
    But after waking up several nights covered in sweat and feeling sicker and weaker by the minute, Kurt decided to call a doctor—a general practitioner this time—and make an appointment. He got in a few days later and by then he was coughing constantly and had mild fever.
    The doctor X-rayed Kurt’s lungs and drew blood to send out for fast testing. It turned out that the photographer had pneumonia, but the doctor needed more time to determine what kind of pneumonia it was.
    Kurt’s blood test results were back in no time. The physician studied them and noticed that his patient’s white cell count was way out of the normal range. That was reason enough to ask permission to perform an HIV test. Permission granted, the doctor drew more blood from Kurt’s arm and sent it out for more testing, and then he sent his patient home with a prescription for antibiotics to treat his pneumonia. Kurt was to return in a week for a follow-up visit.
    During the following days, despite the doctor’s treatment, he started feeling even worse and by the end of the week Kurt became certain of his HIV status. When it was time for him to return to the doctor’s office, his sister insisted on going with him. “You can’t go in there without some emotional support,” she said and drove him and stood by his side as he received the news.
    According to the new blood test results, Kurt not only had HIV. He had AIDS. He was also experiencing his first bout of PCP—two more were to follow in less than a year. His T cell count was fifteen. [In comparison, the T cell count for a healthy person is approximately one thousand or more, measured per unit of blood.]
    Being a general practitioner, the physician thought it was time to turn his patient to an HIV specialist, and so he sent Kurt immediately to the hospital. There, although doctors didn’t tell Kurt much else at the time, they told the photographer’s mother that her son might not make it through the night.

A PICC line, or Peripherally Inserted Central Catheter line, is a thin flexible silicone tube that medical professionals insert into patient’s vein and through which they administer intravenous medications, transfusions or chemotherapy for long periods of time. This way, the patient doesn’t have to make frequent hospital visits to receive necessary treatment or to be given multiple injections. For optimal results, the PICC line has to reach the large veins in the patient’s chest. This allows medical professionals to administer large amounts of medication directly into the bloodstream. Therefore, the medications can work fast and most efficiently.
    Nurses are usually the ones to start the PICC line. They can insert the tubing straight in the patient’s chest using general or local anesthetic. In this case they call the line a central line. Nurses can also insert the tubing in the patient’s arm, usually near the bend of the elbow, and in this case the line is called a peripheral inserted central catheter line, or PICC line. After starting the PICC line, nurses then use an X-ray machine to help them guide the tubing all the way up into the patient’s large veins in order to make sure it is in the right position (close to the heart). Only then can they begin administering the medication through the PICC line. The entire procedure requires only local anesthesia of the skin where the line is inserted and it generally takes about thirty to forty minutes.

Kurt Weston’s vision loss didn’t happen overnight. The photographer experienced the first symptoms of CMV retinitis in 1993, while he was still working at Pivot Point. When preparing the room for a photo shoot, he would notice flashing spots on his backdrops or he would see shreds of cotton and start blinking, trying unsuccessfully to get rid of them. Only later he realized that those shreds of cotton floating in his view were floaters and one of the first signs of cytomegalovirus attacking his eyes.
    Although Kurt always kept his doctor’s appointments and went for his regular checkups, his eye specialist kept misdiagnosing him. A few years later, in California, his new doctor determined that the virus had been doing extensive damage to his patient’s eyes. Parts of Kurt’s retina had been infected and then healed, while other scars on his retina were more recent, together causing permanent damage to his sight.
    The virus also spread to Kurt’s esophagus. He started experiencing severe heartburn, so he went to see his doctor. An endoscopy showed that CMV had been making a huge hole in Kurt’s esophagus, causing serious damage… enough to make the doctor wonder how his patient could still manage to walk around.
    Kurt’s first treatment for CMV retinitis involved a medication called ganciclovir. Twice a day, every day, a pump the size of a small tape recorder would administer the necessary dose of intravenous ganciclovir through a PICC line directly into Kurt’s vein.
    The actual process of inserting the line in Kurt’s arm was extremely difficult and painful using a large needle that Kurt didn’t think would fit into his vein. A nurse had to insert a yard worth of intravenous tubing in his arm, and then to guide it up his vein, all the way near his heart. An x-ray machine helped her monitor the entire process and the location of the intravenous tubing so that she could make sure that the line reached the large vein, where it needed to be for maximum infusion of the medication.
    It so happened that Kurt’s nurse was new at running PICC lines up patients’ arms. The procedure didn’t work as planned and so she had to try it several times. She failed each time. When she finally succeeded inserting the needle into Kurt’s vein and started guiding the tube inside, the tip of the needle would hit the inside walls of the vein, causing him even more discomfort.
    As the nurse was guiding the tubing, it eventually got stuck halfway up Kurt’s arm. She tried to continue the procedure, but no matter what or how hard she tried, the tubing seemed to move no farther. Several failed attempts later Kurt started already to be in pain. He also became more and more exasperated with the entire procedure and the nurse’s lack of experience. But the more exasperated he became, the less options she had to finish inserting the PICC line in his arm. So, she thought that it was best just to give up for the day. She rolled the remaining tubing under his arm and decided to administer the medication anyway.  Then she left, telling Kurt that she was going to be back the following day to take the PICC line out and reinsert it in his other arm. And so she did, and the second time around she succeeded without any problems… and also without using any anesthetic.
    Sometimes, while inserting a PICC line, the tip of the needle could “burst” the patient’s veins. Some patients on intravenous medications experienced these “bursts.” Their PICC lines cracked and scratched their veins, leaving bluish spots on their arms.
    For the next couple of years, Kurt Weston has continued going about his daily routine, while having the tubing into his vein and the medicine pumping in his bloodstream to keep the CMV from further damaging his eyes. He has continued running his SWAN meetings, keeping up with his doctor’s appointments and his medications.
    He managed to stay alive. Yet, the PICC line interfered with every aspect of his life. Moving his arm up and down and back and forth caused Kurt’s tubing to move and start coming out of his vein, a little with each move. Every time he had to take a shower, he first had to wrap a plastic bag around the external part of his PICC line and then secure it in place with an elastic band, to make sure it was safely covered so that it would not get wet.

Z is for Zerit

The infected hunter, the world’s AIDS patient zero, left his village for the large cities of Africa and the opportunities they provided. The crowds and busy city nightlife attracted both the hunter and his virus in different ways. Soon, HIV started to spread from person to person, taking over communities, cities, countries and continents, and becoming what’s known today as the global AIDS pandemic. Presently, some forty million people are infected with HIV and more than twenty million have already died of AIDS, worldwide.
    The first U.S. casualties surfaced in June 1981, in Los Angeles, where doctors found a strange type of pneumonia, called Pneumocystis carinii pneumonia in five young gay men. PCP is a type of pneumonia caused by a microorganism that occurs naturally in the lungs of people and animals. Although the medical professionals didn’t know the cause of the disease, they knew it was associated with a weakened immune system. And the cause for this impaired immunity was still a mystery. The patients died within days. 
    That same summer, an article published in the New York Times announced the appearance of a rapidly fatal form of a rare cancer that doctors had found in forty-one homosexual men. A CBS newscaster also reported that a strange cancer seemed to be spreading in the gay community and that nobody knew where it came from or how it was spread.
While at school in L.A., Kurt also learned how to use specialized programs that allowed him to magnify the letters and words on the computer screen as much as necessary for him to read his emails and documents. Zoomtext is such a software program that has a “Document Reader” function that reads the text back to Kurt in a woman’s (or male’s) voice, depending which one he chooses.
    The photographer impressed all his instructors by excelling in all his courses and graduating from Institute for Junior Blind in only half of the time usually required to complete the course. Only three months after his enrollment, Kurt Weston received the certification to prove that he was ready for the road ahead.
    While still in L.A. and halfway through his studies, Weston had the chance to reconnect with the Asian Pacific group and its members he’d met through Va. The experience turned out to fulfill one other legacy Va had left him.
    One Valentine’s Day weekend in 1998, Kurt had just gotten back home from school and was looking forward to some much needed rest, when a few members of the Asian Pacific Crossroads group called him to invite him to a party. At first, Kurt declined the invitation. He was too exhausted and had a full week worth of studies in Los Angeles ahead of him. But the Asian Pacific members refused to take no for an answer, and even offered to pick him up from his place and take him to the party. So Kurt accepted to go with them in the end.
    It was at this party that the group organizers decided they wanted to raise money for the organization through a fundraising project—a calendar featuring some of the Asian men who were members of the organization.
    “All we need is a photographer,” they said.
    “Well… Kurt is a photographer,” the ones who knew Kurt pitched in.
    “Yeah, but I’m legally blind now,” the photographer said.
    They were somehow disappointed and asked him if he’d ever tried to photograph after losing most of his sight. He still had his equipment, but couldn’t see anything clearly, so he wasn’t sure he could even focus the camera anymore. They interpreted his insecurity as hope and decided to give him two models to practice with for the calendar pictures and see what he could do.
    So, he ended up using his special equipment, the handheld telescope and special magnification finger-thick glasses he’d purchased with the help of the Department of Rehabilitation. Kurt worked with the two models for a full afternoon, using different lighting for different pictures. The process was much slower than when he used to work as a fashion photographer.
    At the end of the photo shoot, Kurt presented Asian Pacific Crossroads with a few sample photos of his models and waited for their reaction. And they took a look at his work and were amazed by its quality. They named him their photographer and decided to let him shoot the entire calendar.

Drugs like Zerit and ddI gave him neuropathy. While he hasn’t been on these medications in quite a long time, the numbness in his extremities has started to improve slowly, yet it has never gone away completely. When it comes to neuropathy, the photographer still has his good days and his bad days, especially when he has to stand or walk for a long time. Even these days, he still experiences a tingling sensation in his limbs, although it’s not a constant pain anymore.
    Other side effects can be even more serious, depending on the type of medications the patients are on. The new HAART regimens have radically transformed the progression and manifestation of AIDS, but their unquestionable benefits came with a price tag. While the unattractive fat accumulations caused by these drugs cannot always be noticed, it doesn’t mean that they cannot cause significant problems for patients. Sometimes the erratic fat accumulations happen deep inside the body, in the arteries, causing AIDS patients high cholesterol and triglycerides levels, thus increasing the risk of blocking their arteries, which can lead to heart attacks or even death.
    Some AIDS patients on certain HAART regimens require open-heart surgery. Weston has never had to go through anything like that, but a good friend of his who was on the new drug regimens wasn’t that lucky. She died of a massive coronary. She was forty-eight.

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