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 loved one with pulmonary fibrosis may have been prescribed oxygen therapy to help them breathe more easily. Oxygen therapy will change how they approach their day-to-day life. Getting around the house and going out may become more of a challenge.1 However, with some advanced preparation, the transition can be made easier.
Oxygen at home
Because oxygen is stored in pressurized containers there are certain safety measures you will need to make sure are taken when oxygen is used at home. Encourage your loved one to follow these tips when using your oxygen to avoid any hazards.
There are four key considerations when using oxygen at home:
- Smoke detectors - make sure they are installed in every room
- Extinguishers - keep fire extinguishers in an accessible place
- Oxygen tank - store the oxygen tank in a clean, dry place- at least 2 meters (6 feet) from any heat, electricity or fire
- Smoking - ensure your loved one and others do not smoke near the oxygen tank
Your loved one’s pulmonologist or respirologist, as part of their treatment team, will have discussed which type of oxygen delivery system is best suited for them. They may have been given an oxygen concentrator, compressed gas, or liquid oxygen. Most importantly, the instructions and guidelines supplied with the oxygen, as well as local laws and regulations should be followed.
Traveling with pulmonary fibrosis
If your loved one with pulmonary fibrosis is on oxygen therapy and they’d like to travel, it is important to plan ahead.
Depending on how they are going to travel, certain arrangements might need to be made. For example, there may be forms to fill in, additional charges (e.g. from airlines), or special procedures for the storage and transport of the oxygen equipment.1,2
You can use the following steps as a guide to help your loved one prepare for traveling:1
- The first step should always involve a discussion with your loved one’s treatment team about any plans, so they can discuss their fitness for travel
- You can speak with your loved one’s travel provider on their behalf to guarantee that they can accommodate all of their treatments, especially supplemental oxygen therapy
- Contact a travel insurance provider to ensure an insurance policy is in place to cover all eventualities, such as medical expenses, cancelations and personal equipment/belongings
- Download our checklists for air, train and car travel to help guide you through the travel planning process
Although your loved one with pulmonary fibrosis may be prescribed extra oxygen over the long term, this doesn’t mean that they must limit their daily life. Often patients find that when a prescription of supplemental oxygen is made, it helps them to be more active.
Show references
Hide references
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1.
American Thoracic Society. Patient Education: Oxygen Therapy. Available at: https://www.thoracic.org/patients/patient-resources/resources/oxygen-therapy.pdf. [Accessed April 2019].
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2.
British Lung Foundation. Going on holiday: How and where can I travel? Available at: https://www.blf.org.uk/support-for-you/going-on-holiday/how-and-where. [Accessed April 2019].
Also in this section
Lifestyle changes
Encouraging your loved one to make small changes and stick with them will help them better manage symptoms of pulmonary fibrosis
Planning for a bad day
Knowing that you're prepared for the tougher days can give you some peace of mind and help your overall sense of wellbeing
For a long time, I had problems with [oxygen] in my nose. I was pushing it in front of me and I was avoiding going to town, but now I don’t mind anymore. It’s a matter of vanity. I know I feel better with the oxygen, and I don’t want to go without it