Saturday, October 22, 2011

 Thirty Years of AIDS: We're Still at the Letter C in the AIDS Alphabet

More about Cytomegalovirus, aka CMV, aka AIDS-related retinitis, as told to me by Kurt Weston, an award-winning visual artist living with the outcome of CMV--legal blindness.

I'd like to share with you an excerpt from Journeys Through Darkness, a biography on the life and art of Kurt Weston, a long-term AIDS survivor and award-winning, legally blind visual artist, an excerpt that offers a perspective of what it meant (in the very near past) to live with HIV/AIDS and related CMV retinitis.

As always, thanks for stopping by!
Alina Oswald
Author of Journeys Through Darkness

    Cytomegalovirus, or CMV for short, is a herpes kind of virus that infects most adults, especially after a certain age, and is transmitted in many ways, including eye contact with unclean hands. Once the virus enters the person’s body, it stays there for the rest of that person’s life and most of the time it doesn’t cause any damage. People in normal health are usually unaware of having it.
    When the immune system starts deteriorating below a certain level (T cell count becomes lower than fifty, measured per unit of blood), CMV becomes active and can attack various organs, like the lungs, esophagus or the eyes. When the virus infects the lungs, it causes CMV pneumonia. In the eye, the virus attacks the retina causing CMV retinitis, which, if left untreated, can lead to partial or total vision loss. CMV retinitis is the most common cause of blindness in people living with AIDS.
    With the advent of HAART regimens in the mid-nineties, the number of cases of CMV retinitis in people with AIDS has decreased by ninety percent because the new medications keep patients’ immune systems strong enough, with T cell counts way above the fifty count limit, thus not allowing favorable grounds for CMV activation.
    Kurt Weston’s loss of eye-sight 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. 
    Every so often, the nurse stopped by Kurt’s home to change his tubing and flush the line through with sterile saline solution, but the photographer was the one who had to care for his PICC line around the clock. Therefore, he had to learn how to change his dressing, start the IV medication and do daily maintenance of his PICC line. The entire process was complicated and emotionally devastating for the photographer:
    First, he had to make sure the boxes of PICC line kits were shipped to him on time, so that he would not run out of medication. Each of the kits contained everything necessary for him to start his intravenous medication—the hypoallergenic tape, the betadine swab, the alcohol, bandage, cotton swabs and the boxes of syringes.
    In order to start the IV, Kurt also needed the actual bags of fluid that came at a “mind-boggling” price. These bags of fluid needed refrigeration, especially during the summer, when temperatures soared over one hundred degrees. Therefore, during all the years of intravenous therapies, Kurt’s refrigerator was constantly half-full with bags containing intravenous fluid, which, eventually, had to be injected in his body.
    Once the yard-long tubing was in his arm and the IV running, Kurt had to keep his PICC line clean to reduce the risk of infection. Maintaining the PICC line required knowledge, patience, guts and daily attention. Yet, it could not guarantee to keep the potential infections at bay.
    The whole maintenance process required tedious work and became an intrinsic part of Kurt’s daily existence. Every day he had to clean the external part of the line to keep the tubing from getting stuck or infected. Every day he had to peel off his dressing, clean the skin around the PICC line with alcohol, put the Betadine bandage and then replace the dressing with a new one. And each time he peeled off the dressing, he’d have no choice but also pull a bit of the tubing out of his arm. After a while, the PICC line slowly started to migrate out of his vein, until it was out so much that it needed to be replaced. That’s when the nurse had to come in to replace the tubing.
    Kurt Weston has lived with PICC lines in his body and with bags of intravenous medication in his fridge for a couple of long years. During this time, nurses had to insert into and take out of his veins some twenty-five PICC lines, enough to make his arms look like those of a heroine addict.
    One summer, when the photographer was really sick while living with PICC lines in his arms, a friend from San Francisco decided to fly in and visit. The photographer remembers him as a very self-absorbed man who was also living with the virus. He wanted to see how Kurt was doing, and also to visit Chicago and have some fun while in the city. Around the same time, another friend happened to be in town to visit Kurt. And so the three of them decided to go to Grant Park to a Bastille Day (July 14th) concert. But before they could leave, they had to wait for the nurse to stop by and replace Kurt’s PICC line.
    The day was humid and torrid, with temperatures soaring way above one hundred degrees. When the nurse finally showed up, she was already covered in sweat, which was rolling down her cheeks, neck and arms, sticking to her fingertips. She followed Kurt to his bedroom and got to work. As she kept trying and failing to insert the new PICC line into Kurt’s vein, the friend who also happened to be in town stood by the photographer’s side and held his hand. He could not ease Kurt’s pain, but he could at least try to keep him calm and comfortable as much as it was humanly possible.
    Meanwhile, on the other side of the bedroom door, the friend from San Francisco started getting increasingly impatient with having to wait on Kurt and his PICC line. The entire procedure was taking way too long and he was concerned he wasn’t going to make it to the concert on time. So he started pacing the apartment, yelling through the closed door, demanding to know what they were doing inside and what was taking them so long. Yet, he never offered to help or to go inside and see with his own eyes what was going on.
    By then the nurse was doing her best trying to stay calm and “cool” and to ignore the heat coming from outside and the angry voice outside the bedroom door. Unfortunately it wasn’t helping her much. The harder she worked, the more she started to doubt her ability to get her job done. She began apologizing to Kurt, and it was Kurt who ended up comforting her, telling her that it wasn’t her fault and encouraged her to give it one more try.
    Throughout the entire ordeal, the friend by Kurt’s side left the room only once, when he had enough of the whining coming from outside the door. He went to tell the other guy to leave and go to his concert, and that he and Kurt would catch up with him when they were ready. Then he resumed his seat by Kurt’s bedside, as the other guy stormed out of the apartment.
    It took the nurse three tries to get the PICC line in Kurt’s arm. Afterwards he could again self-administer his medication and not worry about it for a while longer.
Living with the PICC line in his body was not easy. Kurt had to deal with the side effects to the medication and keep up with cleaning and maintaining the line. He also had to keep his PICC line from being noticed whenever he went out. He had to hide all the tubing sticking out of his vein for multiple reasons—to protect his PICC line from getting damaged, to protect himself from being stigmatized and judged, and also to prevent people from freaking out when staring at his arm.
    Over time, Weston came up with various ways of camouflaging his PICC line. He would cut out the top of a gym sock and use it to cover up his arm, or he would buy one of the supports, the elbow braces, from a sporting goods store. Using the brace looked more natural, as if he’d had a sports injury. 
    Years later, when he moved to Orange County and was asked to speak to students about HIV/AIDS as part of Positively Speaking program, Weston would appear at the workshops wearing that sock to cover his vein. And while talking with the students about HIV, he’d pull the sock down and show his young audience his PICC line and explain how the medication was administered through that tubing in order to keep him from going totally blind. And while doing so, he’d notice some girls in the classroom turning ghostly white, although none of them fainted.