By 2011, Brenda Chambers had been living uneventfully with well-treated HIV since her 2003 diagnosis. She had given up drinking and drugs around the time of that diagnosis, was enjoying her job managing an HIV program in Salt Lake City and generally felt like everything was going fine.
Then she became crippled by fatigue. “I was so tired I couldn’t work my eight-hour job anymore and had to go on disability,” says Chambers, 57, who moved last year to the Portland, Oregon, area, where she lives with her son, daughter-in-law and three grandkids. Lab tests showed that her liver function levels were off the charts.
“My doctors told me, ‘We don’t know what’s going on,’” she says, “‘but we’re going to watch it, and for now, let’s take you off your HIV meds.’” (Some older HIV meds have been associated with liver damage; newer ones generally are not.) Yet over the next six months, she became more fatigued. “I just could not get out of bed,” she recalls.
Finally, once her liver function markers returned to normal and she went back on HIV meds, a liver biopsy revealed that she had fatty liver disease (FLD), a slow buildup of fat in the liver cells that affects millions of Americans, often those with conditions associated with metabolic syndrome, such as obesity, diabetes, high blood pressure and high cholesterol.
Currently, no drugs are approved to treat FLD, but a few are being studied. The main recommendation is to get more exercise, even basic walking, and to improve one’s diet. That means substituting sugary, fatty and empty-calorie foods (like white bread, white rice and French fries) for lean protein (chicken, fish, pork), beans and nuts and lots of fruits and vegetables. (Also, no smoking and minimal to zero drinking.) If you’re living with HIV and FLD, talking with your doctor about switching HIV meds due to concerns about possible weight gain from the HIV meds is also a good idea.
Chambers eventually did get more exercise and improved her diet, even though she admits, “After a year of being in bed, it was hard to start doing anything.” Nonetheless, she started walking to and from the bus for her weekly trip to the doctor, and she replaced her usual meals of cereal or peanut butter sandwiches with salads, chicken and plenty of water.
“I didn’t start feeling decent again until 2013,” she says. In the years to come, she would also struggle with depression brought on by the murder of her son in 2015. Because of that tragic death and her chronic back pain, she’s still on disability.
Though she continues to struggle with depression, she says, “Thankfully, I have an amazing psychiatrist.” Curling up with her two youngest grandkids, ages 4 and 7, to watch such Disney fare as Luca and The Mandalorian also lifts her mood. “But mostly, they’re playing video games,” she laughs.
Even though she still has FLD, she’s not crippled by the liver-driven fatigue she experienced a decade ago, and her liver enzyme levels remain normal. She continues to eat healthily—recently, she says, she had a veggie wrap as well as a delicious chicken curry made by her son—and to make sure she gets in 10,000 steps a day, despite the fact that she lives alongside a county highway and can’t easily walk alongside the road.
She also puts a drop of milk thistle under her tongue daily. The herb is widely believed to promote liver health; however, research on this topic has been inconclusive.
In the coming years, Chambers hopes to become more involved in the greater Portland HIV community, as she was in Salt Lake City. She’s an active member of Positive Women’s Network–USA, a national group of women living with HIV. And she’s looking forward to traveling to some of the national parks she has not yet visited, such as Niagara Falls.
Chambers may never know whether there was a link between her FLD and her HIV and/or her HIV meds. But she’s glad that her liver issues seem to be under control. For others struggling with FLD, she has two key words: “Exercise and diet. It’s all about eating right!”