Apr 15, 2024Partners, Patients

When GVHD affects the lungs, inflammation and scarring of the airways can occur. In its early stages people don’t always notice symptoms — so it’s important to talk to your doctor about proactive pulmonary function testing (PFT) during the first several years after a stem cell transplant, to monitor for changes in respiratory function that may indicate lung GVHD. The sooner treatment begins, the more likely it is to help.

Symptoms and Treatment of Lung GVHD

When symptoms of lung GVHD are present, they’re a direct result of the inflammation and scarring that happens within the small airways of the lungs. It’s common for people to feel things like:

  • Shortness of breath, or feeling like you can’t take a full breath
  • Wheezing
  • A tight feeling in the chest
  • A persistent dry cough

Children may also experience labored breathing while playing, or have trouble keeping up with others their age.

Inhalers are often prescribed to people with lung GVHD, to open the airways and make breathing easier. Other medications may be prescribed as well, including corticosteroids to help calm the overactive immune response that’s responsible for the symptoms of lung GVHD. Medications used to treat asthma (like montelukast) or antibiotics (like azithromycin) may also be utilized.

A special type of light therapy called extracorporeal photopheresis (ECP) is also sometimes used to treat lung GVHD. During ECP, photosensitizing chemicals are combined with a patient’s blood before being exposed to ultraviolet light, which reduces immune cells’ reactivity and calms the overactive immune response responsible for GVHD. ECP has few side effects, and is very well tolerated by most patients.

It’s important to work closely with your doctor to determine what treatment or combination of treatments is right for you.

Taking Precautions with Lung GVHD

No one wants to catch a respiratory illness, or develop a lung infection…it means time feeling miserable, missed days at work, and being forced to sit out from activities you enjoy. But for someone suffering from GVHD of the lungs, these illnesses and infections are much more than a nuisance — they can cause severe illness that may worsen lung function. Respiratory viruses can even be the catalyst that kick starts lung GVHD in some people.

For these reasons, people who have had a stem cell transplant — and especially those who already have lung GVHD — need to be on high alert at all times to avoid infection, especially during cold, Covid, and flu season. If you have GVHD of the lungs, make sure you:

  • Avoid others who are sick with respiratory symptoms of any kind, like a runny nose, cough, or sneezing.
  • Wear a mask in large groups of people, and any place that isn’t well-ventilated or crowded.
  • Stay up to date on vaccinations, per your doctor’s recommendations, including flu, Covid, RSV, and pneumonia vaccines.
  • Wash your hands often, and avoid touching your face to keep germs away from the eyes, nose, and mouth.

Cold and flu season isn’t the only time to stay vigilant, though — even dirt, plants, and contaminated air can cause airway inflammation and infections that can be problematic for people with lung GVHD. Talk to your doctor about activities you can safely participate in, and those you should avoid.

It’s also important to avoid smoking and exposure to second hand smoke of all kinds, whether from cigarettes, vaping, or marijuana. These can all worsen the symptoms of the disease and make infections more likely.

Exercise and Lifestyle Considerations

Exercising and staying as active as possible will help keep your lungs strong — weak lung muscles can make the feeling of shortness of breath worse. This will look different for everyone, so talk to your doctor about the best exercise regimen for your particular situation. Pulmonary rehab can be helpful, too, to help you strengthen your lungs and learn breathing exercises, like the ones detailed here.

As with any kind of exercise, start slow and build up to a level that’s tolerable for you!

In addition to exercise, keeping your body as healthy as possible by focusing on good nutrition, stress management, and high-quality sleep is incredibly important in the fight against GVHD. Working one-on-one with a nutritionist, health coach, and personal trainer can be extremely beneficial.

The Bottom Line on Lung GVHD

Living with the shortness of breath caused by lung GVHD can be difficult, and make activities you once enjoyed harder to participate in. Thankfully, there are effective treatments that can help, including inhalers, corticosteroids, and certain asthma medications. Exercising in whatever capacity you’re able to is also important for keeping your lung muscles strong — weak lung muscles can exacerbate the feelings of shortness of breath.

And, because people with lung GVHD are more susceptible to respiratory infections, it’s imperative to minimize infection risk by taking the proper precautions and receiving all recommended vaccines year-round. Talk to your doctor about what activities you can safely participate in, and what treatments will work best for your unique situation.


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