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Living with pulmonary fibrosis

Physical well-being

Vaccinations

Being proactive about preventing health problems is an important part of staying healthy for anyone living with a lung disease.1 Vaccinations are products that protect people against some potentially serious infectious diseases. Unlike most medicines that treat or cure diseases, vaccinations help prevent them.1

It is very important that people with pulmonary fibrosis receive vaccinations, as lung infections can cause symptoms to worsen. For example, if someone with pulmonary fibrosis contracts the flu, the flu symptoms can become serious as the patient’s lungs are vulnerable.2

Important vaccinations to get if you have pulmonary fibrosis

Four of the most important vaccinations which patients with pulmonary fibrosis may need to receive are outlined below.

Flu (influenza) vaccination2

The flu vaccination prevents many people from contracting the flu and can help to reduce the risk of developing severe flu symptoms, which can contribute to a worsening of symptoms for patients with pulmonary fibrosis. For this reason, it is important that people who have lung disease are considered to receive the vaccine for flu every year.

Pneumonia vaccination3

There are 2 types of pneumonia vaccinations for adults that protect against different types of the infection—PPSV23 and PCV13. Both vaccines are designed to prevent pneumonia, which can cause complications and exacerbate the symptoms of people with chronic pulmonary conditions, including pulmonary fibrosis.

Shingles vaccination (also known as zoster)4

Shingles is caused by the same virus (called zoster) that causes chicken pox. Anyone who has had chicken pox as a child has the virus lying dormant in their nerves, and it can reemerge in adulthood as shingles. The best way to prevent shingles is by using a vaccination called the zoster vaccine. The vaccine contains a weak version of the actual virus, so if you are taking medications that weaken your immune system, it may not be appropriate for you to take this vaccine.

Pertussis (whooping cough) vaccination

Whooping cough can worsen symptoms for people with pulmonary fibrosis. Although many people have been vaccinated for whooping cough as a child, the vaccine becomes less effective over time.5,6 For this reason, adults should also have a booster vaccine for whooping cough.1,6

Make sure you speak to your treatment team about the right vaccinations to protect your health moving forward.

Nutrition

A healthy diet is a critical component in supporting your health.7 It can help you maintain a healthy weight, keep up energy levels, and strengthen your immune system. For those living with pulmonary fibrosis, maintaining a healthy weight is especially vital.8,9

The importance of a healthy weight

Some people with pulmonary fibrosis find that as symptoms like breathlessness worsen, they rapidly begin to lose weight. This can be because their body is finding it harder to breathe and using up more energy to breathe normally. Patients may also lose their appetite or have episodes of sickness and vomiting.8,9 This weight loss is concerning if you have pulmonary fibrosis because being underweight can lead to weakening of the muscles involved in breathing.9

Being overweight can also be cause for concern, as extra weight can put extra pressure on the lungs and make it harder to breathe.8 It is important to strike the right balance by managing your nutrition and eating a healthy diet.

The importance of a healthy weight

Simple tips to help improve your nutrition when living with pulmonary fibrosis10,11

These tips can help you in everyday life to prevent weight loss, nutritional deficiencies, or digestive problems:
  • If you struggle to eat large meals, try instead to eat 6 to 8 small dishes that are high in calories and in nutrients
  • Take plenty of snacks with you if you plan to be active for more than 2 hours. Fruit, nuts, or sandwiches are good practical choices
  • Drink 2 to 3 liters of water per day
  • Make sure you eat enough high-protein foods. Meat and dairy products like yoghurt and cheese have lots of protein to help your strength. High-protein foods should be included in your diet several times a day
  • Try to keep a supply of plenty of frozen foods, snacks, and other non-perishables. That way, preparing a meal is easy and quick whenever you need it
  • If you have diarrhea, avoid spicy and sour foods, and foods that are high in sugar and fat
  • Try to avoid sugary drinks such as soft drinks and fruit juice
  • To prevent weight loss, eat more high-fat foods like cheeses, cream-based foods and yoghurts, or high-calorie drinks like fresh fruit juice or yoghurt drinks
Quick tip

Your treatment team may be able to put you in contact with a registered dietician, who can help you build an effective nutritional plan to support your health while living with pulmonary fibrosis.

Exercise and yoga

In addition to medication and treatment, you may want to explore other ways to help manage the physical and psychological challenges that come with pulmonary fibrosis. Exercise is a key part of maintaining physical and mental well-being and can also help improve your overall quality of life.12 There are lots of ways to stay active such as walking, strength exercises, and yoga.

Getting started with your new routine

If you are not used to living an active lifestyle, the idea of regular exercise may seem daunting. However, increasing your physical activity will help both your mental and physical well-being.12 Every little bit of effort helps, and even simple exercises can make a big difference.

Here are some quick tips to help you get started:
  • Speak to your treatment team before beginning an exercise regime—They can recommend the most suitable activities for you
  • Include exercise in your daily life—Trust your body and try to move more during your everyday activities, like walking, cleaning, or gardening
  • Don’t try to do too much—Choose a small goal first, such as something that needs a little more efforts, like climbing a flight of stairs or going shopping on foot
  • Divide your exercise goal into short stages—If you complete one of them, that’s already a small victory, which could motivate you to try the next one
  • Keep a record of your exercise and activities—Bring the record to appointments to discuss with your treatment team
Exercise and yoga

Many people with pulmonary fibrosis will be offered a pulmonary rehabilitation program. This includes educational training about pulmonary fibrosis, as well as supporting exercises that may be performed in a group.

Quick tip

The benefits of exercise will only last if you keep exercising regularly (eg, 2-3 times per week). Always try to continue exercising when you can to maintain the benefits you have gained.

Even simple exercises can have benefits

Your new routine shouldn’t be strenuous. Try simple, light exercises and aim towards doing between 15 to 30 minutes a day, such as talking a walk, gardening, or doing some light stretching.

Exercise has many benefits, including12:
Dumbell
Improved strength, endurance, agility, and coordination
Heart in hand
Increased physical fitness
Shortness of breath
Reduced shortness of breath
Star with up arrow
Greater mobility and quality of life
Mental well-being
Improved mental well-being

Explore new practices like yoga

Yoga is an ancient practice that combines exercises with breathing techniques and meditation. It can help improve the health and happiness of those who practice it regularly and has been demonstrated to improve the quality of life of people with long-term diseases.13

What does a yoga class involve?

A key part of yoga is pacing your breathing to your movements, which can help with breath control. Yoga can take different forms but most classes involve a gentle warm-up, light breathing exercises, a series of poses and movements that stretch and strengthen, and a relaxing cool down.

Your treatment team may recommend trying yoga to help improve your general health, flexibility, and strength.13 In fact, some hospitals and treatment teams may arrange classes specifically for people with pulmonary fibrosis and other long-term diseases. Speak to your treatment team to find out more about yoga classes available in your area. You may also research and find yoga classes in your area on your own.

Quick tip

Some classes may be more physically demanding than others. Speak to the teacher before you begin the class to make sure that it is appropriate for you.

As with all forms of activity that may involve different levels of physical exertion, it is important to discuss any plans you have with your treatment team. They will be able to help you decide on what additional practices can best support your health and well-being.

Sleep

Sleep is vital to your overall health and well-being.14 However, many people with pulmonary fibrosis complain of poor-quality sleep. Poor sleep or sleep deprivation can lead to a variety of problems, such as tiredness, difficulty concentrating, forgetfulness, and irritability.14

Potential causes of poor-quality sleep14-17

There are several causes of poor-quality sleep, including:
  • Symptoms of pulmonary fibrosis itself (eg, shortness of 
breath, coughing)
  • Related conditions, such as acid reflux
  • Side effects of medications
  • Depression
  • Sleep breathing disorders, such as obstructive sleep apnoea

Obstructive sleep apnoea in pulmonary fibrosis

Obstructive sleep apnoea is a sleep disorder where breathing repeatedly stops and starts during sleep. It is caused by the throat muscles occasionally relaxing and blocking the airway during sleep.18 To treat this condition, people may use a continuous positive airway pressure (CPAP) device, a small pump that delivers compressed air through a mask that fits over your nose and mouth.19

In some people with pulmonary fibrosis and obstructive sleep apnoea, using a CPAP device can markedly improve their activity levels.16 A CPAP device can feel unusual or uncomfortable, but people who stick with it usually adjust and see their symptoms improve significantly.19,20

Sleep
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Important

Speak to your treatment team if you believe you have obstructive sleep apnoea, as they may be able to recommend a CPAP device.

Helpful tips to promote a healthy night’s sleep

The tips below should help you to improve your sleep and energy levels throughout the day:
  • Limit your caffeine intake, such as coffee and energy drinks, especially in the afternoons and evenings
  • Try to exercise when you can. Exercising can improve the quality of your sleep
  • Maintain a regular sleep schedule. Going to bed and waking at the same time each day helps you develop a sleep rhythm for your body to follow
  • Eat large meals earlier in the day to give your body time to digest food before you go to sleep
  • Allow yourself time to unwind and relax before bed, limiting time spent on electronic devices such as mobile phones or laptops
  • Consider doing pursed lip breathing before bed to help you relax
Quick tip

Speak to your treatment team if you are having difficulty getting a full night’s sleep after trying these tips. They may refer you to a specialist sleep center for a more detailed assessment of your sleeping habits.

Quitting smoking

Smoking is one of the biggest influences on your health when you have a lung condition. If you have been diagnosed with pulmonary fibrosis, it is important to quit smoking. Quitting any habit can be hard but there are a lot of resources available that can help. Even if you have tried to quit in the past, you may find success using the tips below. Your treatment team can also help provide expert advice to help you through the process.
 

Practical tips to help you quit smoking

Make a list of reasons

Set your reasons for quitting and use them as reminder to keep you on track and motivated. These reasons might be obvious, like protecting the 
health of your lungs. Others might be saving money, protecting the health of people around you, and prolonging the time you get to spend with family and friends.

Talk to your treatment team

Your treatment team will be able to help you quit smoking. They can help you enrol in a "stop smoking" clinic and can offer other services such as prescribing nicotine replacement or other measures and medications.

Join your local stop smoking service

Many areas have local stop smoking services. A stop smoking service can help you quit smoking and stay smoke-free. You may have one-on-one or group meetings where you can discuss your challenges with other people who are quitting smoking.

Be mindful of high-risk times and triggers

Smoking isn’t just a physical addiction. It is also linked to the way your brain works and everyday routines and triggers. Do your best to avoid your triggers and look for ways to occupy your mind during these situations, such as exercising, using a stress ball, or spending time with family and friends.

Don’t punish yourself if you slip up

Quitting is hard, and you’re not a failure if you slip up. Throw out the rest of the pack and try to think about what triggered your response, so you can stop it from happening again in the future.

Celebrate your victories

Celebrating small victories will help strengthen your reasons for quitting. Plan celebratory events ahead of time for important milestones (eg, 1 week, 1 month, or 6 months smoke-free). Never underestimate how far you have come and the hard work and effort you’ve put in.

Community and support groups can connect you with others living with pulmonary fibrosis.

Indicating mental well-being

Abbreviations: CPAP, continuous positive airway pressure; ILD, interstitial lung disease; IPF, idiopathic pulmonary fibrosis; PF, pulmonary fibrosis; PPSV23; pneumococcal polysaccharide vaccine 23; PVC13, PCV13 pneumococcal conjugate vaccine 13; RA-ILD, rheumatoid arthritis-associated interstitial lung disease.

  1. European Lung Foundation. Vaccination and lung disease. Updated June 3, 2024. Accessed October 10, 2024. https://europeanlung.org/en/information-hub/keeping-lungs-healthy/vaccination/ 

  2. Cottin V, Crestani B, Valeyre D, et al. Diagnosis and management of idiopathic pulmonary fibrosis: French practical guidelines. Eur Respir Rev. 2014;23:193-124.

  3. Mirsaeidi M, Ebrahimi G, Allen MB, Aliberti S. Pneumococcal vaccine and patients with pulmonary diseases. Am J Med. 2014;127(9):886.e1-886.e8.

  4. Kimberlin DW, Whitley RJ. Varicella-zoster vaccine for the prevention of herpes-zoster. N Engl J Med. 2007;365:1338-1343.

  5. Cherry JD. Epidemic pertussis in 2012--the resurgence of a vaccine-preventable disease. N Engl J Med. 2012;367(9):785-787.

  6. Pesek R, Lockey R. Vaccination of adults with asthma and COPD. Allergy. 2011;66(1):25-31.

  7. Asthma and Lung UK. Eating will with a lung condition. Accessed October 2, 2024. https://www.asthmaandlung.org.uk/living-with/healthy-eating/eating-well

  8. Poulain N, Doucet M, Major GC, et al. The effect of obesity on chronic respiratory diseases: pathophysiology and therapeutic strategies. CMAJ. 2006;174(9):1293-1299.

  9. Asthma and Lung UK. Living with a lung condition: staying a healthy weight. Accessed October 2, 2024. https://www.blf.org.uk/support-for-you/eating-well/maintain-a-healthy-weight

  10. Chest Heart & Stroke Scotland. Living with idiopathic pulmonary fibrosis. Accessed October 2, 2024. https://www.chss.org.uk/documents/2013/11/living-idiopathic-pulmonary-fibrosis-pdf.pdf

  11. American Lung Association. Nutrition and pulmonary fibrosis. Updated June 7, 2024. Accessed October 2, 2024. https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/pulmonary-fibrosis/patients/living-well-with-pulmonary-fibrosis/nutrition.html

  12. Vainshelboim B. Exercise training in idiopathic pulmonary fibrosis: is it of benefit? Breathe (Sheff). 2016;12(2):130-138.

  13. Ranjita R, Hankey A, Nagendra HR, Mohanty S. Yoga-based pulmonary rehabilitation for the management of dyspnea in coal miners with chronic obstructive pulmonary disease: a randomized controlled trial. J Ayurveda Integr Med. 2016;7(3):158-166.

  14. National Heart, Lung, and Blood Institute. Sleep deprivation and deficiency. Accessed October 2, 2024. https://www.nhlbi.nih.gov/health-topics/sleep-deprivation-and-deficiency

  15. Mody R, Bolge SC, Kannan H, Fass R. Effects of gastroesophageal reflux disease on sleep and outcomes. Clin Gastroenterol Hepatol.
2009;7(9):953-959.

  16. Milioli G, Bosi M, Poletti V, et al. Sleep and respiratory sleep disorders in idiopathic pulmonary fibrosis. Sleep Med Rev. 2016;26:57-63.

  17. Asthma and Lung UK. Sleep and lung conditions. Accessed October 2, 2024. https://www.asthmaandlung.org.uk/living-with/sleep-lung-conditions

  18. Mayo Clinic. Obstructive sleep apnea. Updated July 14, 2023. Accessed October 2, 2024. https://www.mayoclinic.org/diseases-conditions/obstructive-sleep-apnea/symptoms-causes/syc-20352090

  19. National Health Service. Obstructive sleep apnoea. Updated September 23, 2022. Accessed October 2, 2024. https://www.nhs.uk/conditions/obstructive-sleep-apnoea/treatment/

  20. Schiza S, Mermigkis C, Margaritopoulos GA, et al. Idiopathic pulmonary fibrosis and sleep disorders: no longer strangers in the night. Eur Resp Rev. 2015;24(136):327-339.