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Living with pulmonary fibrosis

Practical tips

Planning for the future

Whether you have just been diagnosed with pulmonary fibrosis or have been living with it for a longer period, it is important to have a plan for the future of your treatment and overall well-being. Knowing when your symptoms are getting worse can help you and your treatment team decide what you should do in your home, at your healthcare provider’s office, or in the emergency room.

Your future pulmonary fibrosis care plan might include:

  • Access to care at a specialist centre1—Be sure to 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
  • Information about the right treatment for you as early as possible2—Work with your treatment team to make sure you understand the different treatment options available
  • An assessment for pulmonary rehabilitation3—Pulmonary rehabilitation can reduce your symptoms, improve your fitness, and help you function better in your daily life
  • Oxygen therapy4—If recommended by your treatment team, oxygen therapy can help your ability to move around and reduce feelings of breathlessness

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.

Planning for the future
Quick tip

Care planning is an ongoing activity that takes time and energy. Do not feel the need to do it all at once.

Travelling

With some extra planning, travelling with pulmonary fibrosis can remain a fulfilling experience

A diagnosis of pulmonary fibrosis should not prevent you from doing the things you enjoy, like taking holidays or visiting friends and family. However, since the symptoms of pulmonary fibrosis can create challenges when travelling, it is important to make arrangements that consider your condition.

Considerations when choosing your destination5:

Altitude

At high altitudes, there is less oxygen in the air. This makes it much harder to breathe. Therefore, you may need to have additional oxygen or adjustments to your current oxygen treatment when travelling to high altitudes.

Climate

Very hot or cold climates can make it harder to breathe or cause symptoms such as coughing or breathlessness to flare up. Other pollutants such as pollen in the spring can also affect your breathing.

Terrain

Walking uphill or on rough terrain is more difficult than flat roads or level ground. This extra effort may make your breathlessness worse.

Quick tip

You should discuss your options with your treatment team, the travel provider (eg, travel agent or airline), and insurance companies to make travel plans that work for you. Consider using supplemental oxygen to help make you more comfortable.

Power of attorney

Setting up a power of attorney lets you choose who will manage certain decisions

A power of attorney is a legal document that allows a person of your choice to represent you and make decisions on your behalf. It is a type of advance directive, which means you can provide instructions for your future care if you either do not wish to make your own decisions, or if you lose the ability to make decisions in the future.6

The person with the power of attorney can be a family member, a friend, or a professional (eg, a lawyer/solicitor). It is important to choose someone trustworthy to be in charge of personal affairs.

Typical decisions someone may be allowed to take as part of an advance directive may include7:

  • What type of medical treatment the person receives
  • Whether the person should go into a care home
  • How the person lives their daily life (eg, their diet)

A power of attorney can also authorise someone else, if needed, to help manage financial affairs. However, the person who sets up the power of attorney still has full control over the scope and time period agreement. For example, a power of attorney may be set up to allow someone to manage the payment of bills on your behalf, but that does not let them action all financial decisions, such as selling your house. The power of attorney agreement can also be set for a temporary period, such as when you are in hospital.

Your preferences may change over time or if your situation changes and that's ok. You can change your advance directive at any time. Make sure you discuss changes with your treatment team and your chosen health advocate, and then update your documents.

Power of attorney
Quick tip

Speak to your treatment team for additional advice on where and how to begin setting up a power of attorney.

Learn more about resources for those who care for a loved one with PF.

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Abbreviations: ILD, interstitial lung disease; IPF, idiopathic pulmonary fibrosis; PF, pulmonary fibrosis; RA-ILD, rheumatoid arthritis-associated interstitial lung disease.

  1. 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.

  2. 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.

  3. Swigris JJ, Fairclough DL, Morrison M, et al. Benefits of pulmonary rehabilitation in idiopathic pulmonary fibrosis. Respir Care. 2011;56(6):783-789.

  4. 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.

  5. Asthma and Lung UK. Travelling with a lung condition. Accessed October 2, 2024. https://www.blf.org.uk/support-for-you/going-on-holiday

  6. Luck T, Rodriguez FS, Wiese B, et al. Advance directives and power of attorney for health care in the oldest-old - results of the AgeQualiDe study. BMC Geriatr. 2017;17(1):85.

  7. National Health Service. Giving someone power of attorney. Updated May 1, 2024. Accessed October 2, 2024. https://www.nhs.uk/conditions/social-care-and-support/lasting-power-of-attorney