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Planning for the future
Helpful ways to plan for different situations, such as the changing or worsening of your pulmonary fibrosis symptoms
Sometimes it is hard to know what to do when you receive your diagnosis or when symptoms change or worsen. Your treatment team can help you plan for this if this happens. Knowing when your symptoms are getting worse can help you and your treatment team decide what you should do in your home, at your health care provider’s office or in the emergency room.
Whether you have just been diagnosed with pulmonary fibrosis or have been living with it for a longer period, it is important that you have a clear plan in place for the future of your treatment and overall wellbeing.
Below are few things to consider having in place.
Get support from the treatment team at a specialist centre1
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It is vital that you seek access to specialist clinical support early on. They can help support you to give you the most effective treatment. Speak to your treatment team to find out if there is a specialist centre near your area
Access information about the right treatment for you as early as possible2
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It is vital that you have access to all the information you need to understand the different treatment options available
Community and support groups
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Pulmonary rehabilitation can help patients feel more in control of their condition. It can support patients to feel more independent, and improve their symptoms and general fitness
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Pulmonary rehabilitation is also likely to contribute to an improved quality of life for most patients with pulmonary fibrosis
Pulmonary rehabilitation
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For those it is recommended for, oxygen therapy can help patients breathe easier and so feel they are able to live a more normal life
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Oxygen therapy can help patients, who otherwise may have been too unwell, to complete a course of pulmonary rehabilitation
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Oxygen therapy can help with symptom control
Please visit the oxygen therapy and travelling pages to learn more about how supplemental oxygen can help to reduce breathlessness.
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Patients need to make informed decisions about their pulmonary fibrosis treatment and management
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Regular follow-up appointments, coordinated by a specialist nurse, can keep patients informed about their ongoing treatments and the available options. They can also give access to palliative care if needed
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People with pulmonary fibrosis, their carers and wider network should be supported so that the person with pulmonary fibrosis receives the care they need to manage their symptoms. A plan for palliative care should also be considered
QUICK TIP
Talking about and making preparations for all of these things can sometimes be stressful and tiring. Don’t feel that you have to do it all at once. Care planning is an ongoing activity that sometimes takes time
To ensure that your future care is consistent, those caring for you and members of your treatment team need to communicate effectively to improve the long-term coordination of care.
Key takeaways
Planning early can help make sure you receive the right support at the right time
Making decisions can be hard. You do not have to plan everything at once
Learning about different treatments such as pulmonary rehabilitation or oxygen therapy early can help you to be prepared
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Thickett DR, Kendall C, Spencer LG, et al. Improving care for patients with idiopathic pulmonary fibrosis (IPF) in the UK: a round table discussion. Thorax. 2014;69(12):1136–1140.
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Ramadurai D, Corder S, Churney T, et al. Understanding the informational needs of patients with IPF and their caregivers: 'You get diagnosed, and you ask this question right away, what does this mean?'. BMJ Open Qual. 2018;7(1):e000207.
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Swigris JJ, Fairclough DL, Morrison M, et al. Benefits of pulmonary rehabilitation in idiopathic pulmonary fibrosis. Respir Care. 2011;56(6):783–789.
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Graney BA, Wamboldt FS, Baird S, et al. Looking ahead and behind at supplemental oxygen: A qualitative study of patients with pulmonary fibrosis. Heart Lung. 2017;46(5):387–393.
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Duck A, Spencer LG, Bailey S, et al. Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis. J Adv Nurs. 2015;71(5):1055–1065.
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Sharp C, Lamb H, Jordan N, et al. Development of tools to facilitate palliative and supportive care referral for patients with idiopathic pulmonary fibrosis. BMJ Support Palliat Care. 2018;8(3):340–346.
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“It is important to stay positive, to find the doctor that you trust in, to have a good support from the family, stay active, have a healthy food intake, and so overall it is important to create a positive atmosphere”
