Terri’s Story

For three weeks, Terri thought she had the flu, with symptoms including a cough that just wouldn’t go away. As a transplant survivor of 28 yearsexternal icon, Terri is often slower to recover from common infections. This is because of the medicines she takes that weaken her immune system to prevent her body from rejecting her liver. Yet her illness turned out to be something much worse than she ever thought possible.

“I thought I was dying. . .  I lost a lot of weight. My family was very concerned,” Terri said.

Finally, Terri went to the emergency room, where the doctor took several scans of her lungs. At first, the doctors weren’t quite sure what was making Terri sick, initially thinking it might be lung cancer. But her infectious disease doctor suspected a fungal infection and ordered a blood test for Cryptococcus, a fungus that lives in the environment. When surgeons removed nodules from Terri’s lungs, testing of these nodules identified fungus as the cause. Terri had previously heard about Cryptococcus infection from a television show but was in shock when she heard her diagnosis. This infection is a leading cause of illness and death in people living with HIV, particularly in Africa. It can also affect other people, especially those with weakened immune systems, like people who have had transplants.

Terri making a peace sign during a follow-up exam

Terri making a peace sign during a follow-up exam after her cryptococcosis diagnosis.

In the beginning, her infectious disease doctor told her beating it would be like a marathon. She replied, “We’ll have to see about that. I’ve run a real marathon before.”

Before she got cryptococcosis, Terri enjoyed not only running but also walking and spending time outdoors. Now, she often gets tired from daily activities like walking around the house or even taking a shower. “I constantly have to sit down and take breaks. . . I can’t just ‘go, go, go’ like I used to,” she said.

The antifungal medicines she is taking are helping her fight the infection, but they have serious side effects, too. My hair fell out, I would often get sick, and I had to lower my dosage.” she said.

Despite the side effects, she said she will continue to take the medicine because she knows it is her best chance to beat this infection and recover. Slowly but surely, she is rebuilding her stamina, and she remains optimistic. She has started taking walks outside again but still must make frequent stops so she doesn’t tire herself out.

Terri hopes her story will help others like her and help make people more aware of Cryptococcus infections and other fungal diseases. Doctors should be aware of Cryptococcus as a possible diagnosis, so they can test and treat people with these diseases quicker and increase their chances for recovery and survival. “I wonder if I hadn’t had a transplant if I would’ve been tested so quickly for this—healthy people can get sick with it too,” said Terri. Disease from Cryptococcus is uncommon in people who don’t have weakened immune systems, but physicians and other clinicians should consider it as a possibility in people who have unexplained respiratory symptoms.

Learn more about preventing infections caused by C. neoformans and C. gattii.