What is (GVHD) of the lungs (Pulmonary GVHD)?

You might feel short of breath, or less able to exercise. Chronic GVHD of the lungs can cause coughing, chest tightness or feeling like you cannot take a deep breath. 

With chronic GVHD of the lungs, you also have a higher risk of lung infections. In early chronic GVHD of the lungs, you may not notice any symptoms. Pulmonary (lungs) function tests, also called PFTs, are the only tests that can find chronic GVHD of the lungs early. If your doctor suspects chronic GVHD of the lungs, you may also need a special CT (or CAT) scan that takes pictures of your lungs when you breathe in and out.

To diagnose chronic GVHD of the lungs, your doctor may need to do a bronchoscopy. This procedure lets your doctor take samples from your airway and lungs using a small tube. Your doctor may look for lung infections that can cause symptoms similar to chronic GVHD of the lungs. 

Treatment may work better if your doctor finds and treats chronic GVHD of the lungs early, before you have symptoms. Ask your doctor about doing PFTs periodically to watch for GVHD of the lungs especially if you already have chronic GVHD in other parts of your body. 

Pulmonary rehabilitation has helped some people with severe chronic GVHD of the lungs. During this treatment, specially trained therapists help you breathe better so you can do as much as possible. 

Lower your risk of infections by: 

• Washing your hands 
• Avoiding sick people, especially those with cold, flu or lung infections 
• Getting vaccines (immunizations) that your doctor recommends 
• Talking to your doctor right away if you have new symptoms, like coughing, shortness of  breath or chest tightness 
• Ask your doctor if it is safe to garden, mow the lawn or do other activities involving dirt, soil or plants. Some people have gotten lung infections after these activities. 
• Take your medicines as directed by your doctor. 
• Be as active as you can. Weak muscles will make shortness of breath seem worse. But be patient with yourself, because your lungs may not let you be as active as you’d like. 

Additional treatments include: 

• Prescription immunosuppressant medicines (medicines that hold back your immune system) for your lungs may help reduce inflammation and decrease scarring.  
• Your doctor might prescribe an inhaler. This is a medicine that you inhale (breathe into) your lungs. Be sure you know how to take your inhalers. If they are taken wrong, they will not work. 
• Your doctor might also prescribe medicines used for asthma (such as montelukast) or antibiotics (such as azithromycin).  
• Sometimes, doctors prescribe extracorporeal photopheresis (ECP) to treat GVHD of the lungs. ECP is a treatment where blood is removed from you, treated with light and then given back to you. 
• Sometimes chronic GVHD of the lungs gets worse even with treatment. In that case, you may need an oxygen tank to help you breathe. Some patients have had lung transplants for chronic GVHD of the lungs. 

• Sometimes you might not feel short of breath but your doctor may still order PFTs. The PFTs help your doctor see how your lungs are working and decide if you might need treatment. 
• Your doctor will measure whether your lungs are getting better with treatment by doing PFTs. PFTs are the best tests to measure GVHD of the lungs. 
• Every individual’s medical situation, transplant experience and recovery is unique. You should always consult with your own transplant team or family doctor regarding your situation. 
• Ask your doctor if you might be eligible to participate in clinical trials (research studies) for treatment of chronic GVHD of the lungs. Clinical trials help doctors find better treatments for patients in the future.

• Your shortness of breath gets worse 
• You have a fever, or pain when you breathe 
• Your phlegm or mucus from your throat isn't clear (e.g., it's brownish or greenish) 
• Your cough gets worse or you're less able to take a deep breath