I have just been told I have lung fibrosis. What now?
The word is frightening. This article says what helps in the first weeks.
The word fibrosis in a CT report keeps many people awake, especially after a few minutes of searching online. First of all, know that fibrosis is not one single disease and that each person’s experience differs.
Ask which type it is
Interstitial diseases come in many types. Some have a known cause, some do not. Treatment depends on the type and severity, so the first question is: “Which type do I have, and how did you reach that?”
Keep your starting numbers
Your first spirometry, blood oxygen and CT are the point of comparison for what comes later. Make a folder and keep them all.
Move away from causes
If you smoke, stopping matters. If dust, mould or birds play a part, your doctor can say how to avoid them. Ask about recommended vaccines too.
What does treatment do?
Treatment does not repair the scars, but treating early can limit further damage. In idiopathic pulmonary fibrosis, antifibrotic medicines slow progression. With effective treatment, some people have few symptoms for years, though this cannot be promised to everyone.
Stay active
Regular exercise and pulmonary rehabilitation are a serious part of treatment. If your oxygen falls with activity, oxygen can help you stay active.
Who to talk to
Keep your family informed. Talk openly with your doctor about the future too: what options are there if the disease progresses? Asking does not mean giving up hope.