Heather Quilici's Story

At age 26, Heather Quilici of Chico, Calif., was busy starting her career, traveling all over the country as a project manager. When she couldn’t shake flu-like symptoms, she thought that she just needed to slow down and take care of herself. 

Finally, at the urging of her sister, Heather decided to see a doctor. 

A rheumatologist at Stanford diagnosed her with polymyositis; a systemic autoimmune disease that causes inflammation in the muscles and can often lead to to severe muscle weakness and damage. As in Heather’s case, polymyositis can also affect other organs including the skin, joints, heart, and especially the lungs.

“I have an antibody in my blood called JO1 that indicates a high risk of lung involvement with my disease,” Heather says. 

All forms of systemic autoimmune diseases can affect the lungs, and in particular, these diseases can be associated with the development of interstitial lung disease, where the lungs become scarred or inflamed. 

Over the next 15 years, despite treatment for her polymyositis, Heather developed interstitial lung disease, and lost lung function at a concerning pace as a result of the disease. She eventually required supplemental oxygen therapy in her day-to-day life.

“I would get out of breath just walking from the car to my office,” Heather says.

She traveled out of state to see other doctors, who told her that she may eventually need a lung transplant. Then, a friend suggested she look into National Jewish Health. 

“I had never even heard of National Jewish Health,” Heather says. “I got online and was really encouraged by what I saw.”

When she arrived,  she was impressed with the level of coordination and communication. “I had a lot of records, and they were all compiled so the doctors could look at all the pieces,” Heather says. 

Aryeh Fischer, MD, chief of the Division of Rheumatology, and Kevin K. Brown, MD, a professor and vice-chair in the Department of Medicine, led her care. They both have extensive expertise in treating patients with polymyositis and other autoimmune forms of interstitial lung disease.

“They were able to look at my lungs and tell me where my disease was moderate and where it was more aggressive,” Heather says.

The doctors recommended a chemotherapy-type treatment regimen to stabilize Heather’s condition, which is still active and aggressive. She continues to come to National Jewish Health for evaluation and to modify her treatment regimen. “It is a rare disease in a young person, and the doctors want to take an aggressive and proactive approach.”

“They’ve been able to stop the progression of the disease,” Heather says. “It is remarkable how my lung function has stayed stable. I haven’t felt out of breath.”

Heather was also appreciative of the doctors’ willingness to collaborate with her doctors in California. “I can’t say enough about that piece,” she says. “It is the most collaborative relationship with another institution that I have seen. If we email the doctors, we get a response right away.”

With improved health, Heather is able to spend more time focusing on the important things – life with her husband and 11-year-old twins. She only needs oxygen to exercise and when she travels to very high altitude. 

“The improvement in my quality of life has been huge,” Heather says. “I am incredibly grateful.”

The Autoimmune Lung Center at National Jewish Health

Many patients with systemic autoimmune diseases, such as rheumatoid arthritis, systemic lupus erythematosus, systemic sclerosis (scleroderma), polymyositis or Sjögren's syndrome, also have associated lung problems. The intersection of these autoimmune disorders and lung disease is often complex, and an interdisciplinary approach to their evaluation and management is often needed for optimal care.  

The Division of Rheumatology and the Interstitial Lung Disease Program at National Jewish Health offer specific expertise in autoimmune lung conditions. As a leading respiratory hospital in the nation, National Jewish Health is one of the best places in the world to seek care for autoimmune lung diseases. 

Patients evaluated in the National Jewish Health Autoimmune Lung Center receive the unique, interdisciplinary approach to care that is intrinsic to the institution. Pulmonologists, rheumatologists, and other related health care providers collaborate to diagnose diseases and create treatment plans tailored to each patient’s individual needs. 

 

 

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