Tuesday, October 18, 2011

Thirty Years of AIDS--The AIDS Alphabet: C stands for CMV

Thirty Years of AIDS: Learning the AIDS Alphabet--C is for CMV one last time

AIDS Alphabet: C stands for CMV…

Living with CMV, as told by Kurt Weston in Journeys Through Darkness, a biography on his life with AIDS and his art inspired by AIDS and related eye-sight loss, an excerpt that sketches a picture of living with AIDS and related disabilities and illnesses.

Journeys Through Darkness: A Biography of AIDS by Alina Oswald
In April of 1995 Kurt Weston received a phone call from his younger brother. The call was not a surprise, but the reason for the call was. His brother, who was living in Orange County, invited Kurt to move in with him. He knew how much Kurt loved the West Coast because the photographer visited as often as he could. So, his brother hoped that Kurt would give it some serious thought and accept the invitation.
Weston did just that and considered it an opportunity to start fresh. And so he began planning his move right away. He intended to have everything packed and the flight ticket in his pocket by the end of August. That way he had a full summer ahead of him to get ready for the West Coast.
Meanwhile, the ganciclovir medication administered through his PICC line and supposed to treat the CMV in his eyes has stopped working. As it happens with viruses (CMV and HIV included), they mutate a lot and become resistant to medication, thus forcing doctors to switch their patients to new drugs in order to keep the infections in check.
Kurt’s doctor decided to put his patient on a new medication, called foscarnet. The problem was that foscarnet had several serious side effects, one being severe kidney damage. Therefore, before even being able to start the treatment, Kurt had first to receive infusions of pure saline solution to hydrate the kidneys and minimize the side effects to the medication. Several months later, the foscarnet treatment started to fail and CMV resumed attacking even more of Kurt’s eyes. 
This treatment wasn’t the last of its kind that Kurt had to go through. The infusions required Kurt to stay hooked to an IV pole twelve hours a day. And while he could not do that, medical professionals administered the medication using a backpack and a small CADD pump—an electronic pump the size of a small walk-man.
During this kind of treatment, Kurt had to carry gallons of fluid medication in his backpack, hook his IV tubing into the pump and then turn it on. That way, while the device was pumping the medications hour after hour into his veins, Kurt could walk around, run his errands and his SWAN workshops, and keep up with his doctor’s appointments and TPA meetings.
It was during one if these treatments that Kurt’s PICC line got infected. It caused fever and fatigue, and it required antibiotics. If not caught in time, the infection could spread throughout the body, causing serious sickness and even death. 
Meanwhile, the heat and the sweat of that summer did not help the infection to go away fast enough, yet Kurt managed, somehow, to get over it. Through it all, he continued sorting through his things, deciding what to pack and what to leave behind, getting ready for the West Coast. And while doing that, he also turned into a not-for-profit organization, putting together fundraising events to raise some money for his trip and for other post-Chicago expenses.    
While preparing for the move, Kurt sold or got rid of what he didn’t need or what he couldn’t take with him. He always had to think three times before deciding what to do with his things and what to take with him that could fit in the room his brother had offered him. And it was terribly hard for the photographer to decide because he didn’t know how much longer he had left to live. Because he had no way of knowing if he was moving to California to start fresh or to die. “It’s very hard when you’re moving and dying,” he explains. “And you get rid of things that are really meaningful to you, [of] part of your life.”

     That particular year Chicago went through a torrid summer. The heat wave claimed hundreds of lives and overwhelmed health officials. Morgues were overloaded and unable to accommodate the corpses that kept arriving at their doors. So, city officials were forced to put in place refrigerator trucks to store the bodies until the morgues could get them.
Kurt had a third—and top—level apartment and the temperature inside stayed steady at one hundred degrees despite the three air conditioning units and several fans that were constantly running. Stretched down on the floor, carrying his medication in his backpack, Kurt was trying to get everything ready for his move across the country. There were times when he thought he was going to pass out, when his heart started racing until it was almost impossible for him to breathe. There were times when he thought he was going to die of heat exhaustion.
But he survived and finished packing. And on September 4th, 1995, he got on the plane to California. It was Labor Day weekend. 
The entire moving process had been intense, but Weston never regretted it because by the mid-nineties, he had no more close friends left in Chicago. They all had died of AIDS. He wasn’t really leaving anything or anybody behind. Besides, despite the fact that he loved running SWAN, he was also aware that his health and his life at the time were not the best. He thought that, somehow, California would help. To this day, Weston believes that had he not moved from Chicago, his health and the overall quality of his life would have been much worse.
But the move to California was bittersweet. Three weeks after his arrival, Weston started to attend the local AIDS organizations in Orange County where he met new people and made new friends. Also, during his first months in California, the photographer became legally blind because of the experimental treatments his new doctors tried on him.
While in Chicago, he’d had to go through the daily hustle of maintaining the tubes sticking out of his veins and his arms, but in time Kurt started getting quite good at managing and caring for his PICC lines. Meanwhile, new treatments and new medications became available, and Kurt’s new doctors in Orange County wanted him off the PICC lines. So, they persuaded him to try the new and improved ways of administering intravenous medications.
One procedure required doctors to surgically insert silicone gel implants in Kurt’s body. The implants were called PassPort and were otherwise known as “implantable venous access ports.” These new kinds of catheters were working pretty much like the PICC lines, only that the catheter was not visible outside the body, but it extended from the port to the large or central veins in the body. The silicon port could be accessed through a needle, and thus the medication could be administered through the needle into the port and farther on through the tubing and into the bloodstream.
The ports Kurt’s doctors wanted to use on their patient were made out of metallic plates on top of which was a silicone gel hump (or septum). These ports were to be surgically implanted under the skin, in the muscle of the chest or arm. 
The procedure sounded pretty straightforward to Kurt. In addition, using the new implants he wouldn’t have anything dangling out of his skin anymore. So he agreed to have the small surgery done and opted to have the silicone gel ports put in his arm, because he didn’t want anything implanted in his chest.
The procedure was done in October 1995, and right from the beginning the port became infected. Doctors put Kurt on antibiotics to subside the infection, but the treatment didn’t work. 
A month later Kurt was running a fever over one hundred degrees. He went back to the hospital where doctors found out that the infection was coming from a nasty bacteria stuck in the tube of the device underneath Kurt’s skin. But while insisting that he needed to have the port in his arm, they did not remove it. Instead, they gave him a massive amount of antibiotics.
For the following three months, Kurt kept having very high fevers despite the oral and intravenous antibiotics he was on. He ended up being hooked to an IV pole all day long, with two daily infusions of antibiotics and two daily infusions of ganciclovir for the CMV in his eyes, pumping through his veins. 
Yet, the antibiotics did not get rid of his infection. In addition, his T cell count dipped to almost null. With his immune system virtually non-existent, the ganciclovir also quit working, because the medication needed some immune system to act on. Therefore, Kurt’s CMV retinitis started running out of control.
At this point, Kurt didn’t care if he was to live or die. He didn’t care if he was going to upset his doctors. He just wanted the device out from under his skin. The doctors finally decided to take it out. For that, he had to go through yet another surgery. The following day all Kurt’s infections started to go away. But by then the CMV had already destroyed more of his retina.
By January 1996 the photographer started to realize that he was already legally blind, but when he shared his concerns with his doctor, the HIV specialist remained sure he could save Kurt’s eye-sight. The available solution was to try two new, experimental medications to treat the CMV.
About the same time a new life-saving medication was coming on the market. It was one of the first protease inhibitors (or P.I.s) medications called Crixivan, and it was part of a new treatment called HAART (pronounced like “heart”) regimen, otherwise known as “the cocktail,” which was going to radically change patients’ lives, turning AIDS from a definite death sentence into the manageable disease that AIDS is today.  
The Highly Active Anti-Retroviral Treatment was (and continues to be) a revolutionary triple-drug therapy made possible by Doctor Ho of the Aaron Diamond AIDS Research Center in New York City. HAART put Doctor Ho on the cover of Time magazine and made him “man of the year” in 1996.
These new kinds of medications first started coming out in December 1995, so during the previous months, drugs like Crixivan were still under last, or phase three, of testing and on the verge of getting FDA approved. Because there were not enough medications for everybody needing them, some drug companies offered to give them to patients on a compassionate use basis only, otherwise known as expanded access programs.
EAP was (still is) a program through which pharmaceutical companies distributed upcoming medications that were already in the pipeline but yet to be FDA approved to people who needed them most. This process had been very rare and extremely difficult before the AIDS years. Usually, a doctor had to call the manufacturer and then the FDA, fill out hours-worth of paperwork and wait for months to get a drug sample, enough only for one patient. And then start all over again, for the next patient. And so on.
Fortunately AIDS has changed all that. The epidemic has forced people living with the disease and AIDS organizations to learn fast the drug industry regulations, to meet with people from the industry and with government officials and to draw proposals. But nothing really happened until people living with AIDS went out in the streets and demonstrated, literally, for their lives. A familiar example is the 1988 ACT-UP demonstration on Wall Street, New York City. [The AIDS Coalition to Unleash Power was founded in 1987.]
Only then, the FDA started allowing drug companies to open trial programs as soon as they had available at least some safety information on the drug. That’s how the “drug lotteries” started in 1989. There were several such lotteries and participants had to meet several criteria.
For example, in 1995 Glaxo provided a (then) upcoming medication called 3TC to over thirty-two thousand people in the United States. It was the largest expanded access program ever.
Merck announced its Crixivan lottery in July 1995. The company was giving away drugs to eleven hundred people in the U.S. and an additional seven hundred fifty patients from twenty-nine countries in Europe, South America, Canada, and Australia. Merck was to pay for the drug, including shipping, and also for post-selection central laboratory tests and the urine pregnancy tests when and if needed. To be able to participate in Merck-organized P.I. lottery, AIDS patients had to meet several criteria, including to be clinically stable, to be able to follow directions and have certain T cell counts and viral loads.
The lottery took place in August 1995. In Chicago, Kurt’s doctor put his patient’s name in the program. By December, Kurt’s new doctors in California received a phone call from his former physician: Kurt had won the lottery. He was one of the eleven hundred AIDS patients approved to receive the new drug. Winning the drug lottery literally saved his life. To this day, the photographer seriously doubts his ability to stay alive if it wasn’t for the new medication.
He started treatment in January, right before he got his doctors to take out the silicone gel inserts from his arm. At the time, there was no way for Kurt, or his doctors for that matter, to imagine the powers of the new HAART regimens, to think that in just a matter of months they would be able to bring his immune system back on track and far from the dangerous zone of CMV activation. All Kurt’s physicians knew for sure was that if their patient didn’t receive the two experimental treatments fast enough, he would lose his vision for good. 
But Kurt knew that his vision was already gone. It took him several months to get his doctor to accept the truth. It wasn’t until May of 1996 that the physician finally agreed to give Kurt a certificate stating that the photographer was legally blind. He needed it to register to the Braille Institute where he could learn how to survive in his new world of new insecurities, and darkness.