Making the most of your appointment
The worsening of a disease/condition over time
A formal documentation when someone else is given the responsibility to manage your affairs and make certain decisions on your behalf
Refers to the lungs
A group of tests used to check how well the lungs take in and release air and how well they supply oxygen to the rest of the body14
A type of high blood pressure that affects the blood vessels to the lungs and the right side of the heart15
Therapy that provides relief from symptoms to help patients live more comfortably with their disease13
Administration of oxygen as a medical intervention11
A small plastic tube or prongs that fit in the nostrils to deliver supplementary oxygen11
Listening to and playing music as a therapy which aims to ease the symptoms of those living with IPF
A sleep disorder characterised by breathing that repeatedly stops and starts during sleep12
A specialist who helps someone recover or live with their symptoms more easily
A machine that removes other gases from the air to provide oxygen for oxygen therapy11
An education and exercise program designed to improve the quality of life for people with lung conditions16
A physician specialised in lung problems (also known as a respirologist)
A product that gives protection against a specific infection
A test used to monitor oxygen levels in a patient’s blood, usually with a non-invasive sensor11
A breathing technique to help control breathlessness and reduce anxiety17
A disease that affects only a small percentage of the population
Something that is associated with an increased risk of disease or infection
A technique that helps to reduce stress and anxiety by helping to understand and manage your emotions
Therapies used alongside conventional treatments that help treat symptoms and may improve overall physical and mental wellbeing
A medical study that investigates how safe and effective a new therapy or technique is for treating a certain disease
A disease or condition that occurs at the same time as another disease or condition
A device to deliver compressed air to improve sleep in people with obstructive sleep apnoea6
A disease where a waxy substance (plaque) builds up inside the coronary arteries, which supply oxygen-rich blood to the heart muscle7
A type of chronic disease that typically worsens over time and is characterized by long-term breathing problems and poor airflow. Chronic bronchitis and emphysema are older terms used for COPD5
Refers to the heart, and blood vessels
A type of medication that aims to slow the scarring and stiffening of lungs to slow disease progression2
Tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide to and from the blood takes place
A test that shows how well the lungs are working by measuring how much oxygen and carbon dioxide is in the blood. This test requires that a small volume of blood be drawn from the patient3
Techniques that involve breathing in a certain way to control breathlessness and strengthen your lungs
A procedure in which a bronchoscope (a medical instrument like a tube) is passed through the mouth or nose into the lung and fluid is squirted into a small part of the lung and then collected for examination4
A lung condition where the air sacs within the lungs (alveoli) become damaged5
Extreme weariness resulting from exertion or illness
Of unknown cause
Rapid and uncontrolled breathing
A disease where there is progressive scarring or thickening of the lungs without a known cause4
The surgical removal of cells or tissue samples from the lung for examination by a pathologist10
The lung tissue becomes thickened and stiff
A test that uses a type of X-ray that produces multiple, detailed images of areas inside the body4
A burning sensation in the chest, which can spread to the throat, along with a sour taste in the mouth
Where inflamed tissue is replaced with scar tissue, making it thicken and become stiffer4
A symptom where the ends of the fingers become wider and rounder8
A digestive disease where stomach acid moves up out of the stomach and irritates the lining of the food pipe (oesophagus)9
A physician specializing in the management of diseases of the digestive system
An event characterized by sudden, severe worsening of symptoms or an increase in disease severity1
Your medical team can give you lots of support, valuable information and advice. This section will help you plan what to say and what to ask at each appointment, so that you can make the most of your time.
During appointments, it can sometimes be difficult to remember everything that your doctors and nurses have said, and everything that you want to discuss.
Here you can find a list of questions and a planner that you can take to your appointments to help you. If you can't print them, you could write down a list of your biggest questions.
It's important to tell your doctor or nurse all the symptoms you have because even things you don't think are very important, might be big clues for your doctor about how pulmonary fibrosis is affecting you.
Some symptoms may seem embarrassing but remember that you won't be the only person who has experienced them, and your medical team will not tell anyone else. The sooner you share these symptoms with your doctor or nurse, the sooner you can get advice on their control or management.
Tell your doctor
- Changes in how active you are able to be
- Changes in symptoms
- The effects of any medication you have been taking
- Changes in your lifestyle
To help you keep track, record any changes on your mobile phone or diary.
Your questions can be about anything, but download our resource to see some examples that other people with pulmonary fibrosis have asked.
It can be reassuring to know what's going to happen next in your medical care, and when. The downloadable in our resources can be filled in with your doctor or nurse. It can be used to collect details of the tests and appointments you will have over the next few months, to help you plan ahead.
Track any changes in symptoms you notice during your day-to-day life
It's important to keep your doctor in the know as they can give you valuable information and advice
Remember to take your list of questions with you to help guide you during your appointments