People with idiopathic pulmonary fibrosis (IPF) are usually told at some point in time that they qualify for supplemental oxygen therapy. The doctor will recommend starting oxygen therapy when someone’s oxygen saturation is too low. Oxygen saturation is a way to measure how much oxygen the red blood cells are carrying compared to how much they COULD be carrying. For example, an oxygen saturation of 100% means that a person’s red blood cells are carrying all the oxygen they possibly can (100%). An oxygen saturation of 90% means that a person’s red blood cells are carrying only 90% of the oxygen that they could carry. The lower the number, the less oxygen is being carried by red blood cells.
A person with IPF qualifies for oxygen therapy if the oxygen saturation falls below 88% at rest (while sitting still). In that case, oxygen should be used all the time. Sometimes the oxygen saturation is above 88% at rest but falls below 88% when moving around or during sleep. When that happens, the person qualifies for oxygen therapy to be used when moving around or during sleep.1
How will the doctor know that I have low oxygen saturation?
Oxygen saturation is easy to measure using a small device called a pulse oximeter (also called a “pulse ox”). Many pulse oximeters are meant to be used on the tip of a finger. The small device shines a light from a light source that stays cool to the touch. The light shines through the fingertip, making the fingertip glow red. The device can analyze the light as it shines through the fingertip. Changes in the way the light is absorbed through the finger tissue allow the device to measure oxygen saturation. No needles are required, and the device is completely harmless and painless. Pulse oximeters are used at the doctor’s office or clinic, and can also be purchased inexpensively to use at home.
Is it harmful to have low oxygen saturation?
Yes. Low oxygen saturation means that the blood is not carrying enough oxygen to keep all the body’s tissues healthy. In medical terms, this is called “hypoxemia” (high-pox-EE-me-ah). Hypoxemia can cause the following problems2:
- Shortness of breath (or worsening shortness of breath)
- Lower endurance during movement or exercise
- Lower maximum work load during movement or exercis
- Increased risk of developing pulmonary hypertension. Pulmonary hypertension is a serious, irreversible condition in which the pressure in the blood vessels around the lungs and the right side of the heart becomes too high. It can be dangerous or fatal in people with IPF.
Can oxygen therapy cure IPF?
No. There is no cure for IPF at this time.
Will oxygen therapy help me live longer?
Only one study has been done on this question.3 The study is nearly 20 years old and was done before modern medications for IPF were available. The data from the study may not be very useful for patients today.
In that study, researchers reviewed the clinical records of 487 patients with IPF who were seen at Mayo Clinic Rochester. Oxygen therapy was advised in 133 patients. Those 133 patients also may have received no other treatment, or treatment with medications that are no longer used today (colchicine, prednisone, or colchicine plus prednisone).
The researchers looked at survival time in each of the groups. Age, gender, and severity of lung disease at the start of the study were taken into account. The researchers found that there was no significant difference in survival between those on oxygen therapy and those without oxygen therapy.
Further studies in modern patients would help answer the question of whether or not oxygen has any effect on survival. Right now, it seems like oxygen does not help or hurt survival time, but more studies are needed.
Will oxygen therapy help with my symptoms of IPF?
Before beginning oxygen therapy, most patients with IPF expect that oxygen therapy will improve their breathlessness, improve their ability to exercise or move about, and help them feel less tired.4,5 In a study of 43 patients with IPF who were about to start oxygen therapy, some patients made comments to the researchers about their expectations for what would happen3:
- “[Now] just walking across the house I have to stop and rest. I’m just hoping that I can actually do something.”
- “I hope to be more physically active and to be able to do things that, looking back, I’ve stopped doing or do considerably less.”
- “I would hope to gain a better quality of life. It would probably help my coughing. [I hope for] more mobility to be able to do things I can’t do right now…”
- “I would hope that it makes things easier to do, and not get tired so quickly. The biggest benefit for me is if it would increase my stamina and energy level. Hopefully, it will help extend my life.”
- “Hopefully it would maintain my ability to do at least the level of exercise that I have now. I hope to live a little longer using supplemental oxygen.”
Survey studies of people with IPF on oxygen therapy generally show that oxygen therapy can help many patients with their mobility and their ability to do chores around the house. Most people feel less tired as well.4-6
Studies about the effects of oxygen therapy on breathlessness have had mixed results.6
- A 2018 survey study of 43 patients with pulmonary fibrosis looked at the effect of oxygen therapy on shortness of breath.5 Patients were given a questionnaire three times: before starting oxygen, after one month of oxygen therapy, and after nine to 12 months of oxygen therapy. The questionnaire was the University of California San Diego Shortness of Breath Questionnaire. On average, the scores on the questionnaire did not improve on oxygen therapy. Only six patients had improved scores. The take-home message is that some patients felt less breathlessness on oxygen therapy, but many patients did not notice a difference.
- A second 2018 study looked at quality of life in patients with fibrotic interstitial lung disease who qualified for oxygen therapy only while moving around and doing activities.7 The patients were divided into a group that received oxygen therapy during movement for two weeks, and those who did not receive oxygen therapy during movement for two weeks. Quality of life was measured using the King's Brief Interstitial Lung Disease questionnaire. The researchers found that, on average, patients using oxygen during movement had significantly better scores on the breathlessness and activities questions and on the chest symptoms questions. The average scores for psychological symptoms did not change with oxygen. However, it is important to point out that not every patient using oxygen had improved scores. Again, the take-home message is that some patients felt fewer symptoms on oxygen therapy, but some did not.
Will I become dependent on oxygen therapy?
No. It is not possible to become dependent on oxygen therapy. Oxygen therapy is meant to improve some of the symptoms of IPF, such as fatigue and inability to move about without resting. Oxygen therapy does not change the progressive damage to the lungs that happens in IPF.
Over time, the damage (scarring) in the lungs of a person with IPF will become worse, with or without oxygen therapy. That is one reason why some patients mistakenly think they have become dependent on oxygen therapy. They feel worse over time without it. The truth is they would have felt worse over time anyway because of the effects of IPF.
Another reason that some patients may mistakenly think they have become dependent on oxygen therapy is that the amount of oxygen needed usually increases over time. In other words, a patient may start out needing a small amount of oxygen, but the patient needs a larger amount as weeks and months pass. This happens because the lung damage (scarring) caused by IPF itself gets worse over time, with or without oxygen therapy. More oxygen is needed because the lungs are becoming more and more damaged by the disease.
What are the downsides of oxygen therapy and how can I manage them?
Survey studies4,8 of patients with IPF on oxygen therapy have found the most common complaints to be:
- Limited movement in the home/yard because the longest tubing is 50 feet long
- Limited time when out of the home before running out of oxygen in the tank or power for the portable oxygen concentrator
- Difficulty carrying or rolling the oxygen tank or portable oxygen concentrator when out of the home
- Difficulty operating the oxygen equipment or the equipment not working properly
- Not knowing who to call when something is not going well
- Difficulty getting in contact with someone at the oxygen provider company
- Feeling embarrassed or ashamed when going out because of the visible tubing and nasal cannula
- Feeling “tied to the tubes”
- Feeling like a “very sick” person
It is important to reach out for help if things are not going well with your oxygen therapy or your equipment. Do not be afraid to tell your doctor, nurse, or respiratory therapist that you are struggling and need more help and support. Over half of patients with IPF report that they have problems with their oxygen therapy8, so you are not alone.
- Johannson KA, Pendharkar SR, Mathison K, et al. Supplemental oxygen in interstitial lung disease: an art in need of science. Ann Am Thorac Soc. 2017;14(9):1373-1377.
- Raghu G, Collard HR, Egan JJ, et al.; ATS/ERS/JRS/ALAT Committee on Idiopathic Pulmonary Fibrosis. An official ATS/ERS/JRS/ALAT statement: idiopathic pulmonary fibrosis: evidence-based guidelines for diagnosis and management. Am J Respir Crit Care Med. 2011;183(6):788-824.
- Douglas WW, Ryu JH, Schroeder DR. Idiopathic pulmonary fibrosis: Impact of oxygen and colchicine, prednisone, or no therapy on survival. Am J Respir Crit Care Med. 2000;161(4 Pt 1):1172-8.
- Khor YH, Goh NSL, McDonald CF, Holland AE. Oxygen therapy for interstitial lung disease. a mismatch between patient expectations and experiences. Ann Am Thorac Soc. 2017;14(6):888-895.
- Swigris J, Baird S, McCormick M., et al. Evaluating whether oxygen treatment helps people with pulmonary fibrosis breathe easier. Washington, DC: Patient-Centered Outcomes Research Institute (PCORI); 2018.
- Bell EC, Cox NS, Goh N, Glaspole I, Westall GP, Watson A, Holland AE. Oxygen therapy for interstitial lung disease: a systematic review. Eur Respir Rev. 2017;26(143).
- Visca D, Mori L, Tsipouri V, et al. Effect of ambulatory oxygen on quality of life for patients with fibrotic lung disease (AmbOx): a prospective, open-label, mixed-method, crossover randomised controlled trial. Lancet Respir Med. 2018;6(10):759-770.
- Jacobs SS, Lindell KO, Collins EG, et al. Patient perceptions of the adequacy of supplemental oxygen therapy. Results of the American Thoracic Society Nursing Assembly Oxygen Working Group Survey. Ann Am Thorac Soc. 2018;15(1):24-32.