Finding the Right Fit
It was September 1997 and I was a singer, karaoke host, and wife of the owner of the hottest karaoke bar in the San Fernando Valley. I'd been suffering from a deep pain in my chest, making it impossible to swallow. A doctor told me I probably had an ulcer and to see him again in two weeks. By then I had laryngitis and had to stop singing in my show. Now, sitting on the exam table, I practiced the words I would use to tell my husband that it was really AIDS. My "ulcer" was esophageal candidiasis, an AIDS-defining opportunistic infection. I had a 54 CD4 count and 422,900 viral load. All I could think was, "What the hell have I gotten myself into and can I get myself out?"
The first thing I did was go to the library. After reading about CD4 cells, yeast infections, brain disorders, and AIDS dementia, I was numb. Blessed with supportive family and friends, I was encouraged -- no, pushed -- to fight. The doctor who diagnosed me wrote down the names of two HIV specialists saying, "Make appointments with both and 'shop' them until you find the right fit." I visited each twice and chose the one whose positive and aggressive approach to treating me matched my own attitude to fight hard and turn this around.
My new doctor started me on an antifungal for the candidiasis and Bactrim to prevent PCP. The next day I was blotchy, lobster red, and itching, with a fever so high I could barely sit up. Back in the doctor's office for a steroid shot and a ten-day 'scrip for my newly discovered allergy to sulfa drugs. I switched from Bactrim to Mepron, a diaper-yellow, vile tasting liquid substitute, then retreated into the shade to recover and turn my attention to HAART.
At that time, the U.S. Department of Health and Human Services (DHHS) guidelines advised those of us with less than 500 CD4 cells to be on a three-drug combination. I needed drugs that could dramatically lower viral load as well as cross the blood-brain barrier, and Zerit (d4T) + Epivir (3TC) was a good pair of nukes for both. My doctor liked the double protease inhibitor combination of Norvir + Invirase for its added "kick," citing Norvir as good for "boosting" the weaker Invirase.
Could I manage such a regimen? Being a true night person, I have never followed a standard time schedule. Now I would have to fit three full meals (a heretofore never consumed amount) into a day that started at noon and sometimes ended at 2 am. I told my doctor I would fail if I didn't adapt the timing of meals and pill taking. I mean, who ate breakfast anyway? I wasn't going to set an alarm to eat and pretend I could function at some ungodly hour of the morning. I had one good chance to make this work, and I wasn't about to start with unrealistic expectations. After agreeing to eat by 11 am, 5 pm and 10 pm, we were set.
On October 17, 1997, I sat in my kitchen with my wad of pills in hand. Huge and slippery, they stuck to each other and to my sweating palm. I stared at them. They stared back at me. This was the rest of my life. If this didn't work, I would die -- soon. I no longer had a choice. Now it was time to swallow. Each pill rolled from my palm into my fingers. Each one lodged in my throat before water forced it down. Tears welled as I gagged. Just a month before, I was "normal me" but with each hard swallow I turned into a person living with AIDS. Today I gulp them down in groups of five or six, hardly thinking about it, but on that first day, it took an eternity. Within six weeks, my viral load dropped 2.1 logs and my CD4 count rose to 321. For four years, I swallowed 20 to 30 pills each day, depending on medications for side effects and depression as they came and went.
I have lived with nausea, gas and bloating, a "tinny" taste in my mouth, and facial numbness. My breasts grew and wrapped around my back, which developed a hump of its own. My butt disappeared, along with all the shapely fat in my legs and arms. Within months of starting treatment, not one item of clothing I owned fit me anymore. I had to buy larger sizes of bras, pants, shirts, sweaters -- even my shoe size grew by a half. Though my trunk and waist are barrel sized, my thighs and calves are scrawny, forcing me to buy pants large enough to close at the waist with yards of leg material to flap loosely as I walk. I see myself as freakish, and my mood falls and rises as I vacillate between the horror of my body's shape and the miracle that my body still supports life.
In 2001, I developed liver damage, attributed to the protease inhibitors. I stopped taking them, but continued the two nukes by themselves. I lived happily in my half-regimen denial until early this year when my viral load started climbing steadily. Facing this reality check, it was finally time to pick out a whole new regimen.
A genotype test showed I had probable resistance to quite a few NRTIs and most PIs. I had never taken an NNRTI, so this class was virgin territory and I decided to avoid them in this round. Since all the approved PIs are too toxic for me and the available nukes would need an anchor, I looked at drugs still in the pipeline. I chose atazanavir, the new PI, to address my high cholesterol and triglycerides. I was lucky to get it through expanded access. Viread and Ziagen combine well and are easy in dosing, so this became my new "cocktail" on April 5, 2003.
I hope this regimen lowers my lipids and viral load and, perhaps, gives me a chance to get my tired body back in shape. I'm really hoping to stop and reverse my lipodystrophy. I haven't had any of the usual side effects yet and am pleased with this regimen. I'll have to check my liver regularly with atazanavir. For now, it's wait and see.
Shelley Singer volunteers as an HIV/AIDS educator, public speaker and activist in the San Fernando Valley. She also hosts private karaoke parties whenever she can.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.