Aging with HIV: Cheryl Fetterhoff

Cheryl Fetterhoff never thought she would be doing HIV testing and education when she was first diagnosed herself in 1997. But this mother of two and grandmother of six has more courage than most women her age. Now 58, Fetterhoff gives back to her community by helping the homeless, working at juvenile detention facilities, and serving as a certified HIV tester and counselor.  

“I like doing this work and educating people,” she says. “There is so much misinformation out there I can straighten out when I hear it.”

Fetterhoff was already dealing with diabetes before she was diagnosed with HIV. In fact, she found out she was HIV-positive while at the emergency room, after repeated doctor visits related to her diabetes. Doctors told her that her her viral level had escalated to HIV stage three, or AIDS. 

At the beginning, she says, “the biggest challenge was to learn as much as I could about HIV, since I had never known anyone that was HIV-positive before [my diagnosis]. It was all very scary and I didn’t tell my family for the first year.”

By then, she says, “I learned all I could, and figured out that I was going to live and not die from this virus.” 

When she was first diagnosed, Fetterhoff was prescribed Viracept, the newest drug at the time. The three little blue tablets in each dose were very hard to take, she recalls, because they dissolved instantly, leaving her foaming (blue) at the mouth. The sight was hard for her daughters to watch, so Fetterhoff started taking the meds in another room. She also got diarrhea, a common side effect of antiretrovirals; getting used to it, she says, “was an adjustment.” But Fetterhoff put up with it.

“The meds did work and got my T cell count to over 200 from 23,” she recalls. Eventually her viral load reached undetectable levels. “That was great! It meant they were working.” 

But after a few years, she says, things changed. One day, the diarrhea stopped. At first she was thrilled. 

“But at my next doctor visit, my T cell count had dropped and my viral load had gone up. Viracept had stopped working and I had to change my meds. This was very scary to me.” 

Fetterhoff had developed a resistance to the medication. Thankfully, she was switched to medication that did work. That treatment immediately turned her health around. 

Having kept her diagnosis secret from family and friends in Buffalo, New York, she came out about her status once she moved to Palm Bay, Florida, where she resides today. 

“I didn’t know anybody [in Florida], so I didn’t really care who knew I was positive and who didn’t,” she adds. “Today I am involved in every HIV event and group I can find. I try to help as many other people as I can to not feel alone in this struggle. It surprises me how comfortable I am with talking about HIV and sharing new things that are coming out to help people living with HIV and others.” 

Read more from our Long-Term Survivor series here.