Pulmonary Fibrosis: What Family and Friends Should Know

When someone you love learns they have pulmonary fibrosis, family and friends often feel helpless: you can hardly see anything, and yet everything changes. Mr Schaka himself lives with interstitial pulmonary fibrosis linked to rheumatoid arthritis. This article does not replace a doctor. It gathers, in plain words, what lung foundations and patient organisations explain, to help family understand the disease, offer support without smothering, and keep life as full as possible.

Pulmonary fibrosis in plain words

In the lungs, oxygen passes from the air into the blood through very thin walls, those of the air sacs (alveoli). In pulmonary fibrosis, these walls are gradually covered with scar tissue. They thicken and stiffen, and oxygen passes through less easily. The NHS, the UK health service, puts it simply: the lungs become scarred and breathing becomes harder.

“Pulmonary fibrosis” is an umbrella term for several conditions, classed among interstitial lung diseases. Sometimes no cause is found: this is called idiopathic pulmonary fibrosis. In other cases it is linked to long-term exposure to certain dusts (metal, wood, asbestos) or to an autoimmune disease such as rheumatoid arthritis. According to the US Pulmonary Fibrosis Foundation, interstitial lung disease is the most common lung problem in rheumatoid arthritis, even though many people with rheumatoid arthritis never develop it.

The course varies a lot from one person to another: slow for some, faster for others. This is often the hardest part for loved ones to accept. Depending on the case, treatments may slow progression, and pulmonary rehabilitation or oxygen can help in daily life. What suits your loved one is something only their doctor can say.

The signs most often listed by the NHS and France’s Fondation du Souffle:

• breathlessness, first during effort, then sometimes during everyday tasks;
• a dry cough that does not go away;
• marked tiredness;
• sometimes, widened and rounded fingertips (known as clubbing).

An invisible illness

Your loved one looks well, smiles, cracks jokes. Yet climbing a flight of stairs can cost them as much as a sprint costs you. Pulmonary fibrosis barely shows, and that invisibility creates misunderstandings. “You don’t look ill”, “Come on, just a little more effort”: said kindly, these words can still hurt.

The most useful thing is simple: believe what the person tells you about their breathing and fatigue, even when nothing shows. A good day does not mean the disease is retreating. A bad day does not mean everything is collapsing.

Good to know: the carers’ guide from Action for Pulmonary Fibrosis advises contacting the medical team promptly if breathlessness clearly gets worse, if the cough worsens, or in case of fever or flu-like symptoms. If in doubt, call the doctor; in an emergency, call the emergency number of the country you are in.

Breathlessness and fatigue in everyday life

Breathlessness changes the pace of everything: showering, dressing, carrying shopping, talking while walking. People often learn to break their efforts into small steps. For family and friends, a few habits help a lot:

• walk at their pace, not yours, and stop without making a fuss;
• avoid asking questions on the way uphill: talking and climbing at the same time is two efforts;
• keep the home cool in hot weather, without making it icy: heat can make breathlessness worse;
• never smoke near them, and postpone your visit when you have a cold;
• choose places with lifts, benches and seating.

Gentle physical activity is generally encouraged, and pulmonary rehabilitation helps many patients manage their breathing better. But the right level of effort is decided with the care team, not around the family table: talk to the doctor about it.

Fatigue is among the symptoms listed by the NHS and the Pulmonary Fibrosis Foundation. It is not laziness: breathing takes more energy when the lungs work less well. Planning outings for when the person feels best, and accepting that a family meal may end earlier, already helps. Anxiety and low mood are also common, and are worth mentioning to the doctor.

#TheSeasonOfBreath #Thailand #TravelStory #TrueStory #MrSchaka

Pulmonary fibrosis and family: helping without smothering

This is the trickiest balance. Out of love, we want to do everything for the other person: carry, decide, keep watch. But someone who is ill is still an adult, with their own choices and pride.

• ask rather than guess: “Shall I take that bag?” is better than a bag pulled out of their hands;
• let the person do what they can, even slowly;
• offer to go with them to appointments and take notes, if they wish;
• talk about something other than the illness: plans, books, nonsense;
• accept the bad days without looking for someone to blame.

Humour often helps too, with one rule: laugh with the person, never at them.

Carers get tired too. Patient organisations keep saying it: accept the help you are offered, keep time for yourself, keep seeing your own doctor. You help better when you are not running on empty.

Adapted outings and trips

Pulmonary fibrosis does not mean staying shut in. Each outing simply needs a little more planning: flat, shaded places, benches spotted in advance, a taxi for the way back, and no walks in the hottest hours.

For a trip, flying deserves special attention: cabin air contains less oxygen than air on the ground. According to Asthma + Lung UK, some people with a lung condition need oxygen during the flight, and a fitness-to-fly test may be offered to find out. Only the doctor can judge: discuss the plan several weeks before booking. Also think about altitude, heat, terrain and travel insurance that covers the declared condition. If the person uses oxygen, tell the airline well before departure (rules vary: check before you travel).

Thailand, with its humid heat, needs careful preparation. Mr Schaka shares his practical tips in Travelling in Thailand when you are short of breath, and you can pick the most comfortable season with When to visit Thailand, month by month.

Support organisations

Neither the patient nor their family has to go through this alone. Here are recognised organisations that inform patients and those around them:

• European Lung Foundation: information in many languages, including a guide on pulmonary fibrosis for patients and carers;
• EU-PFF (European Pulmonary Fibrosis Federation): the European federation of patient associations;
• Belgium: the Belgian Lung Foundation, dedicated to lung health;
• France: Association Fibroses Pulmonaires France (AFPF), run by volunteer patients and family carers, and the Fondation du Souffle;
• United Kingdom: Action for Pulmonary Fibrosis, with a support line and groups, including one for carers;
• United States: the Pulmonary Fibrosis Foundation;
• Australia: Lung Foundation Australia.

Frequently asked questions

Is pulmonary fibrosis contagious?

No. It is scarring of the lungs, not an infection. You can hug, share a meal and travel together.

Can pulmonary fibrosis be cured?

Today, no treatment makes the scarring disappear. Some treatments can slow progression in some patients. Only the doctor can say what is appropriate.

How do I talk about it with a loved one who is ill?

Simply, letting them choose when and how much. Ask open questions, listen, don’t play it down. And accept that they won’t always want to talk about it.

Living with every breath counted is also the subject of The Season of Breath, the story Mr Schaka drew from his time in Thailand. The information in this article is general: for any question about your loved one’s health, talk to their doctor.