At a glance
Terri's fight with cryptococcosis provides insights into the challenges in diagnosis and treatment.
Terri's story
For three weeks, Terri thought she had the flu, with symptoms including a persistent cough. Terri had a liver transplant 28 years prior and took medications that weakened her immune system to prevent her body from rejecting her liver. Her symptoms turned out to be an illness that was much worse than she thought.
"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 thought Terri's illness might be lung cancer, but were not sure. Her infectious disease doctor suspected a fungal infection and ordered a blood test for Cryptococcus.
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.
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 continues 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 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.