Pulmonary fibrosis symptoms are likely to progress over time. Because of this, it’s important to have regular appointments with your medical team. It’s best to make sure you’re prepared for these appointments so that you get the most benefit from them.

Monitoring your symptoms

You might find it useful to keep a diary of your symptoms and how you feel doing everyday activities. Make a note of your symptoms regularly (at least once a week).

Make sure you tell your medical team if your symptoms seem to be getting worse. Look out for the following:

  • you’re becoming increasingly breathless, especially with mild physical activity
  • your cough is getting worse or has changed in nature (for example, a dry cough becomes productive)
  • you’re suffering from increased tiredness or generally feeling low
  • you’re experiencing unintended weight loss
  • you’ve seen a change in your pattern of breathing (e.g. rapid, shallow breathing)
  • there are any issues that seem to be triggered by your medication.

Making the best of your appointments

Monitoring your symptoms helps you to have more useful discussions with your medical team. You can make sure you don’t forget what you wanted to tell them, or what questions you wanted to ask.

Symptoms that don’t seem important to you may have more significance than you think, so don’t be afraid to mention something that seems unimportant.

If you can, it’s best to do to the consultation with your partner or a friend. If not, try to take notes during your appointment so that you don’t forget what you’ve been told. There’s often lots of information to take in.

If your disease progresses, you may be offered oxygen therapy.

Howard’s story

In a few cases, changing symptoms may indicate more than just a development of your pulmonary fibrosis. APF Trustee Howard Almond noticed that he was getting out of breath doing even the simplest tasks. When he finally saw a consultant, he was diagnosed with a pulmonary embolism.

My advice to patients with IPF, from my own experience, is don't assume that any deterioration in your condition is normal and just the progression of the disease. Talk to your medical team.

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