Interstitial lung disease

Get help straight away if

These are uncommon, but they need same-day care — go to an emergency department, do not wait for an appointment.

Contact us promptly if

Not an emergency, but worth being seen sooner rather than waiting it out.

• Breathlessness getting worse over days to weeks, rather than gradually over monthsThe speed of change is what matters. A faster decline than your usual pattern needs prompt assessment.
• New fever, or a cough that changes character
• Needing oxygen when you did not before, or your usual oxygen no longer being enough

What usually happens

There are many interstitial lung diseases and they behave very differently. What you read online is often about the most aggressive kind, and it may have little to do with yours — the type and the cause matter enormously, so the honest answer to most questions is specific to your diagnosis rather than the category.

Some types have an identifiable trigger — a medication, an exposure at work or home, birds, mould, or another autoimmune condition — and finding it can change treatment substantially. It is worth mentioning hobbies and jobs that seem irrelevant.

Treatment aims to slow change and protect what you have, and for some types to suppress inflammation. Lungs that are already scarred do not un-scar, which is why acting early counts.

Pulmonary rehabilitation helps here too, and staying active within your limits protects the muscles that make breathlessness tolerable.

Vaccinations and avoiding smoke matter more than usual, because a chest infection costs more when there is less reserve.

At your appointment

We will track your exercise tolerance over time — how far on the flat, how many stairs — because change in that is the most useful measure between tests.

Breathing tests and periodic scans are used to monitor. Care is usually shared with a respirologist and we manage a great deal in between.

We will go through exposures — work, hobbies, pets, medications — and review anything that could be contributing.

We will make sure you know what change would mean contacting us sooner rather than waiting for the next appointment.

Worth asking

• —Which type of ILD do I have, and what is known about how it usually behaves?
• —Do we know what caused it, and is there anything I should be avoiding?
• —What change in my breathing should make me call you?
• —Can I be referred for pulmonary rehabilitation?