For Laura Parr, living in self-quarantine isn’t new.
A retired professor who moved to San Antonio in 2015, she is among the 4.2 percent of Americans with weakened immune systems. Diagnosed with several illnesses that affect her immune system, Parr has lived much of her recent life avoiding social gatherings, grocery stores, and the outdoors every flu season for the past several years.
In immunocompromised people, the immune system – the natural defense line against germs that cause illness– doesn’t work as well as the average person’s, explained Dr. Barbara Taylor, an associate professor of infectious diseases at UT Health San Antonio’s Long School of Medicine.
While millions of Americans are taking precautions against the novel coronavirus, individuals like Parr who are immunocompromised are facing new challenges because of the pandemic.
“I’m having to take a lot more medicine than I had been,” Parr said, adding that many of the medical specialists she sees don’t want her going into doctor’s offices or clinics where she could contract the virus.
Parr was first diagnosed with pulmonary sarcoidosis in 2005 while living in Corpus Christi. The rare disease causes small lumps of inflammatory cells in the lungs called granulomas. The illness can cause changes to the structure of the lungs and can affect a patient’s breathing for the rest of his or her life.
In 2013, Parr began falling ill every two or three months. She was informed she also has an immunodeficiency called selective IgA deficiency, in which her body does not produce a specific antibody, leaving her more likely to get sick every time a seasonal cold or flu came around.
Parr immediately started an intravenous treatment every few weeks to help build up her other antibodies. While this helped, Parr found she was still more susceptible to common illnesses, especially around flu season.
Later in 2013, she also was diagnosed with morphea, a rare condition that causes painless, discolored patches on the skin. Her health problems forced her to retire from teaching at Del Mar College in 2015 and move to San Antonio to be closer to her doctors.
While Parr has been receiving an ultraviolet light treatment that has been helping control her morphea, she hasn’t been able to go into the clinic for several weeks now as the pandemic has spread.
“It’s a regimen that goes from going three times a week, then twice – I was down to going once a week, for maintenance,” Parr said. “My dermatologist canceled my appointments for now, though, because they were worried I could be exposed, so now I’ll have to start back at three times a week when I’m able to go out again.”
Despite taking special precautions – including not allowing shoes to be worn in her house, wiping down any outside packages with disinfectant wipes, and taking a shower anytime she comes in from outside – Parr was especially troubled when last week she began exhibiting symptoms of a virus.
After waking up with a temperature, she was experiencing body aches and fatigue. Scared she might have the coronavirus, Parr called her pulmonologist, who said he couldn’t get her a test because she was not yet 65 and her fever had been under 100.4 degrees.
At 61 and being immunocompromised with a lung-specific disease, Parr was shocked she didn’t qualify for a test. Days later, Parr said her dermatologist was working to try to get her on a fast track list for testing but she still hadn’t heard anything back.
“We just really need more tests,” Parr said. “I’m not happy with our current federal administration and its response [to this pandemic].”
Overall, Parr considers herself lucky; her son, who has a doctorate in public health and is a second-year medical student at the Long School of Medicine, lives with her and has been able to help take care of her. Her son, using medical tools he can connect to his phone, has been communicating with her doctors via videoconference calls, she said.
Parr said her fevers have dissipated, but her cough remains. She hopes she’ll be able to get a COVID-19 test soon.
Kelly Trout, whose 38-year-old daughter is immunocompromised and began exhibiting COVID-19 symptoms recently, said she was able to secure the test for daughter Caroline only after she was hospitalized and several doctors had been consulted.
Trout’s daughter has been diagnosed with WAGR syndrome, a rare genetic condition that often causes kidney cancer, vision problems, urinary issues, and a range of developmental delays.
While Caroline Trout typically resides in a group home, her mother brought her home at the start of the pandemic, realizing she was at a higher risk of catching the coronavirus.
“I brought her home to my house so we could stay isolated here,” Trout said. “At first it was wonderful. Then Caroline started not feeling well.”
She began experiencing severe kidney complications, was rushed to the emergency room, and diagnosed with sepsis, a life-threatening infection in the bloodstream. She was admitted to the hospital and tested for coronavirus.
After the test was negative, Caroline Trout was sent home from the hospital immediately.
“The doctor said she was more at risk being in the hospital than being at home, because of the virus,” Kelly Trout said. “You know it’s serious when a doctor feels like, although it would be better to treat the patient in the hospital, they think sending them home is safer.”
Taylor, the infectious diseases professor, specializes in treating immunodeficient patients with HIV and hepatitis. She said she’s been advising her patients to be extra careful – especially because so little is still known about COVID-19.
While the outbreak in China most severely affected individuals over 65 who had other health complications, research is still being done on which health complications make people most susceptible to the coronavirus, Taylor said.
It appears from early studies that people with lung or heart disease are more at risk for COVID-19, as are individuals with diabetes, she said.
She added she is advising her immunocompromised patients to take the same precautions as everyone else: Stay at home, wash your hands, and go out only for necessities.
“My patients are focused on adhering to doctor’s recommendations,” Taylor said. “They’re focused on protecting themselves and the community.”