Understanding your diagnosis and what you can expect in the future (prognosis) is important, but it can be difficult to predict. PF affects everyone in different ways, and how the disease progresses can be specific to each person.
The internet can be a helpful resource, but it can also be overwhelming and scary too. It can be hard to know if the information is already outdated, or if it relates to your specific type of PF. You can easily feel more anxious after reading things online. It’s best to avoid searching for information about PF until you’ve talked to your doctor. They are the best person to talk to about your diagnosis.
Monitoring your PF
Regular check-ups with your healthcare team can help them understand your PF better and learn if it might be getting worse. They can also see if your treatments are working and find other ways to help manage your symptoms. Here are some of the tests that can be used to keep an eye on your PF.
Lung function tests
These breathing tests measure how well your lungs are working. They’re important for seeing how your PF changes over time. Usually, you’ll do two tests when you visit the lung clinic:
- Spirometry: This test measures how much air you can blow out of your lungs and how quickly they empty. You’ll need to blow out as hard as you can, which might feel a little strange but shouldn’t hurt. It might be repeated a few times to get your best result.
- Diffusing capacity (DLCO): This test checks how well your lungs move oxygen from the air into your blood. You’ll take a deep breath of a special gas, hold it for a moment, and then breathe out normally.
Exercise tests
The most common exercise test is the 6-Minute Walk Test. This gives important information about how far you can walk and your oxygen levels when you’re exercising. The goal is to walk as far as you can in six minutes while a healthcare professional watches your heart rate and oxygen levels are watched. This test is usually done in a hallway.
High-resolution computerised tomography (HRCT) chest scans
This is a special type of CT scan that gives very detailed pictures of your lungs. Your doctor will use these HRCT scans to look for changes, new complications, or to see if your PF has gotten
worse.
Resources
Technology and care in pulmonary fibrosis management
This webinar explores the use of technology in the self-management of your
Self management and pulmonary fibrosis
Join Lung Foundation Australia, Dr John Mackintosh (Respiratory and Lung Transplant Physician)
Managing progression in pulmonary fibrosis
The Managing Progression in Pulmonary Fibrosis (PF) fact sheet provides an understanding
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