Patient guide

Bring these

• The earlier X-rays and CTs themselves, not just the reports. Comparison with an earlier CT matters a great deal.
• Spirometry and blood test results
• A list of all your medicines, and the inhalers you use
• Your hospital summary, if you have been admitted
• Your insurance booklet

Think about these questions

• When did the symptom start, and how has it changed?
• How many stairs or minutes of walking make you breathless?
• How many years and how much have you smoked cigarettes or a water pipe?
• What jobs have you had, and what dust or fumes were you around?
• Are there birds, mould or damp at home?
• Do close relatives have lung disease?

Bring someone

If you can, come with someone. Two people remember more than one. Write your questions down beforehand too.

What is spirometry?

This test measures how much air you can breathe out in one breath and how forcefully. It helps the doctor think about asthma, COPD and fibrosis, and it also tracks the course of a disease.

Before the test

• Do not smoke for 24 hours beforehand.
• Avoid a large meal for two hours beforehand.
• Wear loose clothing.
• If your doctor told you not to use an inhaler or medicine before the test, follow that. Do not stop anything on your own.

Tell the team beforehand if you have a chest infection, or have recently had a heart attack, a stroke or surgery.

In the test room

You sit with a nose clip on. You breathe in fully, seal your lips around the tube and blow as hard and as long as you can. This is repeated a few times, sometimes after an inhaler too. The whole appointment can take up to an hour. You may feel briefly dizzy.

Chest CT

A CT shows the detail of the lung tissue and is used to look for scarring, nodules or fluid. Some questions, such as checking for a clot in the lung vessels, need a contrast injection. Say so beforehand if you have an allergy or kidney disease.

Do not interpret the results yourself. Every number and word gains its meaning next to your symptoms and examination.

Read the leaflet first

Each inhaler works in its own way. The leaflet in the box shows how to use it, clean it and when to replace it. If you are unsure, or nobody has watched you use it in the past year, ask a doctor, nurse or pharmacist to see you do it.

Before each use

• Take the mouthpiece cover off completely.
• Check inside and outside the mouthpiece that nothing is lodged in it.
• After use, press the cover back on until it clicks.

Spacer

If you have a pressurised inhaler, your doctor may give you a spacer. It helps more medicine reach the lungs. Ask your doctor or pharmacist how to use it.

Preventer inhalers

• The effect is not immediate, so use it every day, even without symptoms.
• After a steroid inhaler, rinse your mouth or brush your teeth to prevent a sore mouth and infection.

Your doctor sets the amount and how often. If you need your reliever more than before, that is a sign the disease is not under control, and you should talk to your doctor.

When you get breathless

• Let your shoulders drop and lean on something.
• Breathe gently, with little effort.
• Breathe out through pursed lips, as if whistling.
• During hard tasks, breathe out as you make the effort.
• On stairs, pace your breath to your steps.

These methods do not replace your medicine. If you are more breathless than usual, contact your doctor.

Doing less is not the answer

Inactivity weakens the muscles and makes the same small task harder. Regular exercise helps. Getting a little breathless is fine, but do not push too far. If your symptoms are severe or you have not exercised for a while, talk to your doctor first.

A lot of phlegm

If you have a chesty cough, a physiotherapist can teach you breathing methods to clear your airways.

Avoiding triggers

Smoke, dust, fumes, air fresheners, strong cleaning products and perfume can worsen symptoms. Keep your medicines within reach, especially in cold spells or hot, humid weather.

Your mood matters too

Breathlessness brings fear, and fear makes breathing harder. If anxiety or low mood has taken over, tell your doctor. Pulmonary rehabilitation usually includes counselling too.

Who needs oxygen?

The need for oxygen is shown by measurement, not by feeling. Your doctor checks it with a pulse oximeter or a blood gas test. Some patients need oxygen only during activity or sleep, and a walking test can show this.

Three kinds of equipment

• A concentrator takes oxygen from room air and needs electricity. Portable ones are lighter but may deliver less.
• A cylinder serves as a backup in a power cut or for going out.
• Liquid oxygen needs no electricity.

Before you buy or rent, make sure with your doctor that the device delivers enough for you.

Safety

• Oxygen does not burn by itself, but it makes fire burn faster.
• Do not smoke near oxygen, and do not let anyone else.
• Keep the device and tubing at least two metres from flames and gas.
• Secure cylinders so they cannot fall.

Do not adjust it yourself

Do not reduce, increase or stop oxygen without your doctor’s advice. Too little strains the heart and brain, and too much can slow breathing dangerously in some patients. Feeling well does not always mean your oxygen is enough. A finger oximeter may also read wrongly with poor circulation, anaemia or dark nail polish.

Travel

Before travelling, especially by air, talk to your doctor and ask about the airline’s rules.

Call 115 now

• Severe breathlessness: you are gasping or cannot speak
• Your chest feels tight and heavy
• Pain spreads to your arm, back, neck or jaw
• Your lips or skin turn very pale, blue or grey
• Sudden confusion
• Sudden difficulty breathing, chest or upper back pain, a very fast heartbeat, or passing out
• You cough up more than a few streaks of blood
• An asthma attack that does not improve with your inhaler, or you have no inhaler

Do not drive yourself. Take your medicines with you.

Contact a doctor the same day

• A few streaks of blood in your phlegm
• A cough that is quickly getting worse or will not stop
• Feeling very unwell
• Chest pain
• Being more breathless than usual
• A swollen, painful leg or arm with a change in skin colour, which may be a clot

If you have a lung disease

Take infections and sudden worsening seriously and early. If symptoms suddenly get worse or a new symptom appears, do not wait for your next appointment.