Holding on to hope through pulmonary fibrosis

Monica Reyes, right, pictured working as a medical assistant in Bryan, Texas, in 2017, before being diagnosed with pulmonary fibrosis. (Photo by Monica Reyes)

In late 2019, Monica Reyes, then 44, was no stranger to managing complex illness. 

When she was pregnant with her third child in 2007, she developed rheumatoid arthritis, a chronic autoimmune disease in which a person’s immune system attacks its own body’s tissues, causing pain, swelling and inflammation of the joints. She was also later diagnosed with fibromyalgia, a long-term condition that causes widespread pain in the body.  

As a medical assistant of more than two decades in Bryan, Texas, she also had years of experience helping patients navigate care and treatment for their complex conditions.  

But when she started to feel out of breath while helping her patients to their physician’s room in 2019, she knew something beyond her autoimmune conditions may be behind it.  

“I started getting short of breath, coughing, like I had just run around a track,” Monica said.  

She had lived with asthma for many years, but her shortness of breath was worsening despite her regular asthma treatments.  

The doctor she worked for in Bryan scanned her lungs, which revealed they were damaged. She was referred to Rodeo Abrencillo, MD, associate professor and pulmonologist with the UTHealth Houston Interstitial Lung Disease Program. 

Abrencillo confirmed Monica had developed pulmonary fibrosis, a lung disease caused by damage and scarring to lung tissue. Monica’s pulmonary fibrosis was caused by her underlying autoimmune conditions. Sadly, there is no cure for the condition.  

Trying to find the right treatment regimen for Monica was bound to be a challenge because of her other autoimmune conditions. But further complicating her health journey was that a few months after her diagnosis, the COVID outbreak was declared a pandemic, and most of the state was shut down.  

“I ended up getting sick a lot that whole year,” Monica said. “For three years, I was in and out of the hospital.”  

Those hospital stays included complications with her autoimmune disease—which exacerbated her pulmonary fibrosis symptoms—several bouts of pneumonia, the flu, and a COVID infection that almost ended her life. 

“A respiratory infection often is a serious thing in a person with pulmonary fibrosis because their lungs are already compromised,” Abrencillo said. “Additionally, patients with autoimmune conditions are on medicines called immunosuppressants that suppress their immune system. What is a simple cold for someone who is healthy can lead to hospitalization for someone with autoimmune conditions.”  

As a pulmonary fibrosis patient, Monica was also at the highest risk for severe flu, pneumonia and COVID, Abrencillo said.  

“It was hard for her because she also had to deal with infections in her hands. That, plus the recurrent respiratory issues in the background of worsening pulmonary scarring, made things challenging,” Abrencillo said.  

Monica said what kept her going through it all was having Abrencillo in her corner.  

“Dr. Abrencillo was always calling me and checking on me, saying ‘Let’s try this. Let’s start this,’” Monica said. “He’d say, ‘Just hang in with me. We’re gonna get you to feel better. Don’t give up.’ He just made me feel like I’m not the one alone in this anymore.”  

By late 2023, Monica’s lung capacity was down to 40%. 

Things began to turn around in 2024, however, when Monica was started on the immunosuppressant Rituximab. The drug, which is used to treat leukemia and lymphoma as well as other autoimmune conditions, is given to Monica intravenously every six months. An immunosuppressant, Rituximab lowers the activity of specific immune system cells responsible for pulmonary fibrosis progression in Monica’s body.  

Abrencillo also placed Monica on an antifibrotic medication called Nerandomilast, which slows down the rate of declining lung function by modulating scar formation.  

Together, the drugs have helped ease the symptoms of Monica’s autoimmune conditions and slow the progression of her pulmonary fibrosis. Two years later, her lung capacity has strengthened to 48%. 

This summer, Monica celebrated her 50th birthday, a milestone that seemed unlikely a few years ago. She was also able to continue her work as a medical assistant in a remote position.  

Her experience with Abrencillo has reinforced her resolve to stay on top of her health and be vigilant with her medications and appointments. She has a whiteboard in her home with her appointments scheduled out for months, visible to her husband and children, and has reminders on her phone for appointments and her medication schedule.  

“Over the last 10 years I've been dealing with this, there are times that I’ve wanted to throw up my hands and say, ‘I can’t do this anymore. It’s tiring, I’m tired of the medicines, I’m tired of the appointments,’” Monica said. “I have to keep going. It’ll help me make it to the next day, the next week, the next month.”  

Monica said she’s also motivated by her patients and how her journey helps her relate to their circumstances.  

“I love talking to my patients, and they need somebody to have the patience for them,” Monica said. “I say, ‘You know, I have to take a lot of medicines, too.’ I can relate to my patients, and I love hearing how I’ve helped them.”