Treating and Managing

How PAP Is Treated 

PAP is a chronic disease with no cure. Treatment and management of PAP will vary based on the severity of the disease. Mild PAP may not require any treatment. If you have shortness of breath, low oxygen levels or other symptoms, your healthcare provider may recommend treatment focused on decreasing the symptoms and preventing your disease from getting worse.

Treatment may include the following:

• Whole Lung Lavage (WLL): Removal of the accumulated surfactant material from the alveolar spaces. This washes out the protein substance from the lung. This is the most common treatment approach for aPAP.
• GM-CSF Replacement Therapy: This treatment may involve subcutaneous injections of GM-CSF or inhaled GM-CSF therapy using a nebulizer. It is not used to treat congenital PAP.
• If you have secondary PAP, the underlying condition should be treated and/or removal of the causative agent should occur (such as silica dust exposure).
• Supplemental oxygen may be indicated to manage low oxygen levels.
• Immunosuppression: This may be used in more severe cases.
• Lung transplant: Your healthcare provider may recommend a lung transplant for severe PAP that includes lung damage, such as scarring, also called fibrosis.

Managing PAP

It is important to follow the treatment plan that is recommended by your healthcare provider.  You can also take these steps to better manage your disease.

• Go to all of your regularly scheduled healthcare appointments to make sure your symptoms are being well managed. Treatments, such as WLL, may need to be done once a year or more, so seeing your healthcare provider on a regularly scheduled basis is essential for managing your disease.
• Stay up to date on all recommended vaccinations to prevent secondary infections.
• Genetic counseling is recommended for families if your PAP is congenital. 
• When treating your lung disease, it is important to consider all options. Talk to your healthcare provider about whether you would be a candidate for a clinical trial.

Find Support

No person facing a chronic lung disease should go through it alone. Finding a support group early in your journey will provide you with more opportunities to get information about your disease, empower you to better manage your disease, and give you the support you need.

• Better Breathers Clubs
  Learn ways to cope with lung disease and get support from others living with chronic lung disease. Better Breathers Club meetings are in-person or virtual support groups that give you the tools you need to live the best quality of life you can. 
• Patient & Caregiver Network
  Join the Patient & Caregiver Network, which is a nationwide, online support program providing direct access to education, support and connection to others also living with lung disease.
• Living with Lung Disease
  Connect with others, share experiences and learn from friends in this free online forum for people facing lung disease. Our Living with Lung Disease virtual support group can help build your support network and give you a place to chat with peers about how your lung disease is affecting you.
• Lung Helpline
  Our Lung HelpLine is open seven days a week and is staffed by experienced registered nurses, respiratory therapists and certified tobacco treatment specialists. We are here to provide you with the support you need and the answers you are looking for.
• PAP Foundation
  This non-profit patient advocacy organization is dedicated to those impacted by PAP.