Emotional wellbeing

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An operation to replace a patient’s diseased lungs with lungs from a donor
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The worsening of a disease/condition over time

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A formal documentation when someone else is given the responsibility to manage your affairs and make certain decisions on your behalf

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Refers to the lungs

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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

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A type of high blood pressure that affects the blood vessels to the lungs and the right side of the heart15

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Therapy that provides relief from symptoms to help patients live more comfortably with their disease13

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Administration of oxygen as a medical intervention11

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A small plastic tube or prongs that fit in the nostrils to deliver supplementary oxygen11

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Listening to and playing music as a therapy which aims to ease the symptoms of those living with IPF

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A sleep disorder characterised by breathing that repeatedly stops and starts during sleep12

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A specialist who helps someone recover or live with their symptoms more easily

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A machine that removes other gases from the air to provide oxygen for oxygen therapy11

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An education and exercise program designed to improve the quality of life for people with lung conditions16

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A physician specialised in lung problems (also known as a respirologist)

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A product that gives protection against a specific infection

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A test used to monitor oxygen levels in a patient’s blood, usually with a non-invasive sensor11

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A breathing technique to help control breathlessness and reduce anxiety17

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A disease that affects only a small percentage of the population

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Something that is associated with an increased risk of disease or infection

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A technique that helps to reduce stress and anxiety by helping to understand and manage your emotions

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Therapies used alongside conventional treatments that help treat symptoms and may improve overall physical and mental wellbeing

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A medical study that investigates how safe and effective a new therapy or technique is for treating a certain disease

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A disease or condition that occurs at the same time as another disease or condition

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A device to deliver compressed air to improve sleep in people with obstructive sleep apnoea6

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A disease where a waxy substance (plaque) builds up inside the coronary arteries, which supply oxygen-rich blood to the heart muscle7

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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

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Refers to the heart, and blood vessels

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A type of medication that aims to slow the scarring and stiffening of lungs to slow disease progression2

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Tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide to and from the blood takes place

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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

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Techniques that involve breathing in a certain way to control breathlessness and strengthen your lungs

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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

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A lung condition where the air sacs within the lungs (alveoli) become damaged5

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Extreme weariness resulting from exertion or illness

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Of unknown cause

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Rapid and uncontrolled breathing

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A disease where there is progressive scarring or thickening of the lungs without a known cause4

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The surgical removal of cells or tissue samples from the lung for examination by a pathologist10

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The lung tissue becomes thickened and stiff

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A test that uses a type of X-ray that produces multiple, detailed images of areas inside the body4

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A burning sensation in the chest, which can spread to the throat, along with a sour taste in the mouth

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Where inflamed tissue is replaced with scar tissue, making it thicken and become stiffer4

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A symptom where the ends of the fingers become wider and rounder8

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A digestive disease where stomach acid moves up out of the stomach and irritates the lining of the food pipe (oesophagus)9

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A physician specializing in the management of diseases of the digestive system

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An event characterized by sudden, severe worsening of symptoms or an increase in disease severity1

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Caring for someone with pulmonary fibrosis is different for everyone. Although there is no right or wrong way to feel, you can find ways that may help you cope. 

Your relationship dynamic with the person you care for may change. Whether they are your husband, wife, grandparent, child, friend or neighbor, what you can give and receive from one another may alter. It may not be easy at first, but be open and honest with each other.

8/10 people say that caregiving strengthens their relationships. 1

Caring for someone with pulmonary fibrosis can also be stressful at times—and that’s understandable. 1,2
  • Someone you love is experiencing pain, discomfort or distress
  • The management of iIlnesses like pulmonary fibrosis can change.3 You will have to look out for any new symptoms or problems
  • If you take on extra responsibilities, your day-to-day life will have to adapt

However, there are practical ways that can help you manage your own stress and wellbeing. These simple changes don’t take much time but can make a big difference to how you feel.

Never cope alone as a carer there is always someone there to listen and understand how you feel
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  1. 1.

    AP-NORC. Long-Term Care in America: Expectations and Reality. The Associated Press-NORC Center for Public Affairs Research, 2014.

  2. 2.

    Schultz R and Sherwood P. Physical and mental health effects of family caregiving. Am J Nurs. 2008 September;108(9 Suppl):23–7.

     

  3. 3.

    Nakayama A, et al. Patients’ perspectives and experiences living with systemic sclerosis: A systematic review and thematic synthesis of qualitative studies. J Rheumatol. 2016;43: 1363–75.

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