In pulmonary fibrosis, management can change. Over time, managing symptoms becomes very important.

As a carer, you can help them with this and monitor them for any worsening of pulmonary fibrosis symptoms. These can include:^1,2

• Shortness of breath, especially with mild physical activity

• A cough that doesn’t get better

• Tiredness and generally feeling unwell

• Gradual, unintended weight loss

• Aching muscles and joints

• Rapid, shallow breathing

Doctors and nurses may have the medical background about the condition and its treatment, but you know the details of your personal situation.

Be open with your loved one and encourage regular communication about how they are feeling. It might be difficult for them to talk to you about this at first. They could be afraid of acknowledging that their condition is worsening and they’re finding it harder to go about their daily life. Let them know that you are there for them when they’re ready to talk and that you can provide practical support to help manage their symptoms.

Your loved one may also feel overwhelmed and uncomfortable discussing any worsening of symptoms with their treatment team. It can help to remind them of the potential benefits of speaking with their doctor. The sooner their treatment team know, the best they can advise on how to help manage some of these symptoms through lifestyle changes and different treatments. You can also offer to help your loved one with this and speak on their behalf at appointments when they don’t feel that they can.

Carer of someone with pulmonary fibrosis

“Keep smiling, keep positive and make the most of what you can do”