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Living with pulmonary fibrosis

Managing pulmonary fibrosis

Monitoring symptoms

Symptoms of pulmonary fibrosis can progress over time. It is important to monitor your symptoms regularly and report any changes to your treatment team.

Symptoms that might indicate ILD1,2:

Climbing Stairs
Shortness of breath, especially with mild physical activity
Cough puff
A cough that doesn't get better
Unwell
Tiredness and generally feeling unwell
Weight Loss
Gradual, unintended weight loss
Lungs
Rapid, shallow breathing

To make it easier, you may want to use a symptom tracker. Remember to bring your tracker with you to your next appointment.

Your treatment team will use different tests to track your condition, likely some of the same tests you had during the diagnosis process. With this information in hand, they will discuss different treatment options and other lifestyle modification.

Managing your cough

One of the possible symptoms of pulmonary fibrosis is a frequent, dry cough which does not produce phlegm and does not seem to go away. Some people may develop a cough long before they complain of any other symptoms.3

Many people with pulmonary fibrosis have other conditions that can affect their cough, such as gastro-oesophageal reflux disease (GERD), obstructive sleep apnoea, or emphysema.3

The cough associated with pulmonary fibrosis can be troublesome and irritating. However, it can be treated with medications that help to soothe the throat and to stop the urge to cough. Your care team will assess your symptoms and provide you with appropriate treatments.3

Tips to help you manage your cough:
  • Avoid triggering factors (eg, smoking and second-hand smoke, perfume)
  • Take care when speaking. Avoid long sentences and take breaks while speaking
  • Keep your throat moist and drink plenty of water throughout the day 
  • Take your time when being physically active
  • Try different breathing exercises, which can slow your breath and help to reduce the urge to cough
Managing your cough

Breathing exercises

Pulmonary fibrosis causes scarring of the lungs, making them stiffer and less elastic. When your lungs cannot expand properly, it is harder to take a deep breath. This leads to less oxygen in the blood and can make you feel breathless.4

It can be frustrating when routine daily tasks that were once manageable start to become more challenging. It may cause stress or anxiety, which can make that breathlessness feel worse. It can even cause you to hyperventilate, which is when you start breathing very fast without control.

Breathing exercises can control your breathing and help you strengthen your lungs.5 Below are 5 simple breathing exercises that can help prevent breathlessness and settle your breathing.
 

Pursed-lips breathing6

Pursed-lips breathing can help you control your breathlessness and return your breathing to normal if you are beginning to hyperventilate. It may also help reduce feelings of fear and anxiety you may be experiencing. 

Click to expand each tip for more information on how to perform the exercise.

Nose
1. Breathe in through your nose

Inhale as if you are smelling something for about 2 seconds.

Lips
2. Pucker your lips

Position your lips as if you’re getting ready to blow out candles on a birthday cake.

Breathe out
3. Breathe out very slowly

Exhale through your pursed lips for about 4 seconds.

Repeat
4. Repeat

Continue steps 1 to 3 until you’re feeling relaxed.

Belly breathing5

Belly breathing, also known as diaphragmatic breathing, is an exercise that engages your diaphragm—the flat muscle at the bottom of the rib cage that controls your breathing. Belly breathing is best done when you’re feeling rested and relaxed in a position that allows your chest and shoulders to relax, like sitting back or lying down.

Hand
1. Place one hand on your chest and the other on your belly

When you begin to breathe, you should feel the hand on your belly move, but the hand on your chest should remain as still as possible.

Nose breathe
2. Breathe in slowly through your nose

Your belly should move out towards your hand.

Lips
3. Breathe out slowly through pursed lips

Gently press on your belly. This will push up on your diaphragm to help get air out of your lungs.

Repeat
4. Repeat

Continue steps 1 to 3 until you’re feeling relaxed.

Blow-as-you-go7

Blow-as-you-go is a useful technique for helping you carry out daily activities that make you feel breathless.
 

How do I do it?

Breathe in before you start the activity, and then exhale as you perform the activity.

For example, when lifting heavy items, breathe in before you lift the item and then breathe out as you lift. This method can be used as you perform any activity, no matter how big or small. You may also try combining blow-as-you-go with the pursed-lips breathing exercise.


Paced breathing7

Paced breathing means matching your breath with your physical steps and can be useful while you are active—for instance, while you are walking. Try matching your steps to your rate of breathing. You may find it helpful to combine this method with the pursed-lips breathing exercise.

How do I do it?
  1. Count to yourself as you walk.
  2. Try breathing in as you slowly count to 1 while taking a single step.
  3. Then take another 1 or 2 steps as you breathe out over 2 or 3 seconds.
  4. Adjust the number of steps you take while you breathe in and out to a pace that feels comfortable for you.

Paced breathing is also useful when climbing stairs. Try to slowly breathe in and out over the course of 1 to 3 seconds as you gradually make your way up one step at a time. If you are feeling comfortable, you can try to increase the number of steps you take in a single breath.


Relaxed slow and deep breathing7

Deep breathing isn’t just for yoga or meditation—it can be very useful while you’re active too. Use it as soon as you begin an activity, whether that is something small around the home or when you go out walking.

How do I do it?

While keeping active, try to slow your breathing and inhale through your nose as deeply as possible.

Take your time doing and learning these breathing exercises. Don’t try to take on too much at once.

While these exercises are useful, they should not be used alone for managing your health while living with pulmonary fibrosis. In addition to reading the other advice on this site, make sure that you have spoken to your treatment team and agreed on a full plan of care with them. The plan should include all the appropriate medications, pulmonary rehabilitation exercises, emotional support, and information on lifestyle changes.

Music therapy

Music therapy is more than just a form of entertainment. It may also help to improve the health of those suffering from respiratory conditions such as pulmonary fibrosis.8

Playing an instrument can be an exercise in itself, especially if that instrument is in the brass (trumpets, horns) or woodwind family (flute, saxophone). To play these instruments correctly, a certain level of breathing control is needed to be able to apply the right amount of air in intervals timed with the music.9

How music therapy can help you

For those struggling with a lung condition, the idea of playing a musical instrument may seem very optimistic. However, the practice of physically exercising the lungs through playing these instruments can help to gradually improve quality of life.9

Music therapy
Using music therapy to exercise your lungs may have potential benefits, including improvements in9:
Connected
Physical symptoms
Star
Overall quality of life
Brain
Mental well-being

As you explore the potential benefits of music therapy by learning to play an instrument, it is best to start slow. A woodwind or brass instrument can be beneficial long-term; however it is best to start with an instrument you feel comfortable with. Use your best judgement on which instrument is best for you.

Challenging instruments9:

  • Woodwind instrument: saxophone
  • Brass instrument: trumpet

Less demanding instruments9:

  • Woodwind instrument: flute
  • Brass instrument: harmonica

Although music therapy may help to ease the symptoms in people living with lung disease, it cannot treat the underlying cause of the condition itself. Make sure you speak with your treatment team if you plan on playing or taking up an instrument.

Co-existing conditions

Many people with pulmonary fibrosis also have other health conditions, which are often called co-existing conditions. Pulmonary fibrosis may or may not influence these but managing them is just as important as managing pulmonary fibrosis itself.

It is important to remember that every person with pulmonary fibrosis is different and may experience different co-existing conditions. Always be aware of any changes in your condition or symptoms and discuss them with your treatment team. They will be able to guide you on your condition and treatments.

Co-existing conditions

Some common co-existing conditions people with pulmonary fibrosis may have include10-12:

Chronic obstructive pulmonary disease (COPD): 

A lung disease that limits the flow of air into and out of the lungs. This makes it harder to breathe

Gastro-oesophageal reflux disease (GERD): 

A stomach condition that causes stomach acid to move into the food pipe (oesophagus), leading to heartburn

Obstructive sleep apnoea: 

A condition where breathing stops and starts during sleep

Pulmonary hypertension: 

High blood pressure in the blood vessels that supply blood to the lungs

Heart conditions: 

Such as coronary heart disease, where there is a build-up of plaque in the blood vessels in the heart

Other conditions: 

Diabetes, underactive thyroid, and hiatal hernia
 

Developing a treatment plan

If you have a co-existing condition, you may receive medications and care in addition to your treatment for pulmonary fibrosis. Your treatment team will develop a treatment plan for all co-existing conditions you may have alongside your pulmonary fibrosis treatment.

Some medications can interact with each other. If you take multiple medications, you should check with your doctor or pharmacist to see if any of your medications need to be modified. Also important is to discuss any other conditions or symptoms you have in addition to pulmonary fibrosis with your treatment team. They will be able to discuss options with you and develop the most appropriate treatment plan.

Making the most of your appointment

When you have a lung condition with pulmonary fibrosis, you will have regular visits with members of your treatment team. Planning what to say and what to ask at each appointment can help you make the most of your time with your doctor.

Tips for appointments with your doctor:

  • Before your appointment, make a list of the questions you want to ask
  • Write down what your doctor says. Don't be afraid to ask for extra time to write or ask your doctor to repeat themselves
  • If you don’t understand something, ask your doctor to explain it another way

See an example

Make sure to tell your doctor about:

  • Changes in your symptoms
  • The effects of any medication you have been taking
  • Changes in how active you are able to be
  • Changes in your lifestyle

Don’t be afraid to share details with your doctor. Even small things might be big clues for your doctor about how pulmonary fibrosis is affecting you. Some symptoms may seem embarrassing, but you aren’t the only person who has experienced them, and your medical team will not tell anyone else. The sooner you share these symptoms with your doctor or nurse, the sooner you can get advice on their control or management.

Guidance on vaccines, nutrition, and more can help you take care of your physical well-being while living with pulmonary fibrosis.

Next page

Abbreviations: COPD, chronic obstructive pulmonary disease; GERD, gastro-oesophageal reflux disease; ILD, interstitial lung disease; IPF, idiopathic pulmonary fibrosis; PF, pulmonary fibrosis; RA-ILD, rheumatoid arthritis-associated interstitial lung disease.

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  2. Meltzer EB, Noble PW. Idiopathic pulmonary fibrosis. Orphanet J Rare Dis. 2008;3:8.

  3. Van Manen MJ, Birring SS, Vancheri C, et al. Cough in idiopathic pulmonary fibrosis. Eur Resp Rev. 2016;25(141):278-286.

  4. Pulmonary Fibrosis Foundation. Pulmonary fibrosis information guide. Accessed October 2, 2024. http://www.pulmonaryfibrosis.org/docs/default-source/patient-information- guides/patient_info_guide_eng_2013.pdf?sfvrsn=2

  5. Borge CR, Hagen KB, Mengshoel AM, Omenaas E, Moum T, Wahl AK. Effects of controlled breathing exercises and respiratory muscle training in people with chronic obstructive pulmonary disease: results from evaluating the quality of evidence in systematic reviews. BMC Pulm Med. 2014;14:184.

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  7. Association of Chartered Physiotherapists in Respiratory Care. How to cope with being short of breath - breathing exercises. Accessed October 2, 2024. https://www.royaldevon.nhs.uk/media/xajhdqp5/gl-02howtocopewithbeingsob-breathingex-1.pdf

  8. Canga B, Azoulay R, Raskin J, Loewy J. AIR: Advances in Respiration - music therapy in the treatment of chronic pulmonary disease. Respir Med. 2015;109(12):1532-1539.

  9. Lung Institute. Can music treat COPD? Accessed October 2, 2024. https://lunginstitute.com/blog/can-music-treat-copd/

  10. Raghu G, Amatto VC, Behr J, Stowasser S. Comorbidities in idiopathic pulmonary fibrosis patients: a systematic literature review. Eur Respir J. 2015;46(4):1113-1130.

  11. Oldham JM, Collard HR. Comorbid conditions in idiopathic pulmonary fibrosis: recognition and management. Front Med (Lausanne). 2017;4:123.

  12. Margaritopoulos GA, Antoniou KM, Wells AU. Comorbidities in interstitial lung diseases. Eur Respir Rev. 2017;26(143):160027.