Our mission is to improve the lives of lung transplant patients and their families.

Chronic rejection (bronchiolitis obliterans syndrome)

The lungs have the highest rate of rejection compared to all other transplanted solid organs. Therefore, life expectancy is shorter for those who’ve had lung transplants than for those who’ve had other solid organ transplants. The number one reason for this is chronic rejection or BOS (bronchiolitis obliterans syndrome). BOS is present in approximately 48 percent of recipients within five years of the transplant and in 76 percent of recipients within ten years. The disease course varies among each transplant recipient, and some patients will never develop BOS post-transplant. Diagnosis of BOS is difficult. It can only be detected 30 percent of the time via a biopsy taken during a bronchoscopy. Therefore, the diagnosis must usually rely upon the absence of any other cause for a declining forced expiratory volume (FEV1), the amount of air you can force out of your lungs in one second, and a decrease in your forced expiratory flow (FEF 25-75).  Since BOS is characterized by dense, fibrous scar tissue in the small airways of the lungs, air may become trapped in the small airways. A chest CT scan may be ordered to determine if air trapping is present. Risk factors for BOS include, but are not limited to:

  • gastro-esophageal reflux disease (GERD)
  • numerous acute rejection episodes
  • poor compliance with anti-rejection treatment
  • primary lung graft dysfunction (PGD)
  • fungal, bacterial, and viral infections

BOS can also occur without any risk factors present. Treatments that may be tried if BOS is suspected are:

  • changing the dose of your anti-rejection medications
  • adding additional medications to your immunosuppressant regimen, such as CellCept, everolimus, sirolimus, or azithromycin
  •  RATG (three to five IV doses)
  • Campath (single IV dose)
  • photopheresis treatments
  • a surgical procedure called a Nissen fundoplication (stomach wrap) if GERD is present

Unfortunately, there are no proven treatments for BOS. The Lung Transplant Foundation funds research into this life-shortening syndrome. Multi-center clinical trials are needed to adequately study the onset, progression, and treatment options of BOS. As a patient, you can do your part by taking the best care of yourself, being compliant with all medications, and reporting any symptoms to your transplant team.

The Voice of the Patient Report

The Voice of the Patient Report shares patients’ lived experiences with BOS in their own words. Patients share what it’s like to live with BOS, frustrations over insurance not covering the currently available treatments, the lack of available treatments for BOS, and the burden of receiving treatment.

related resources

Sign up for updates
Join our community and receive the latest news about lung transplant, including research, inspiring stories, and resources.
Make a donation
Your tax-deductible donation brings us closer to creating a world where all lung transplant patients live long, healthy lives.
The Lung Transplant Foundation is a 501(c)3 non-profit organization.
Provide Website Feedback
Site Design by:
The Design Booth

Disclaimer: This website does not provide medical advice. The information, including but not limited to text, graphics, images, and other material contained on this website are for informational purposes only. No material on this site is intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment before undertaking any new health care regimen. Never disregard any professional medical advice or delay in seeking care because of something you have read on this website.

Terms of Use