At some point, most people with IPF will need oxygen therapy. You may only need it at certain times, like during exercise or when you sleep, or you may need it all the time. Oxygen levels are measured with a small device called a pulse oximeter, which measures blood saturation. The goal is generally to have the oxygen saturation level above 90 percent. When it drops and stays down, you may need to turn up the oxygen.
Anxiety or breathlessness can initially be caused by low oxygen. “If you can check your oxygen level, that is the first thing to do if you feel anxious,” says Cerro Chiang. “Sometimes patients are in denial, that they may be getting worse and so minimize the symptoms. You may be getting anxious because your body is trying to tell you something is wrong. If your oxygen saturation is below 90 percent, call your doctor.”
Also important is checking your equipment. “The proper amount of oxygen may not be reaching you if there is an equipment failure,” she says. “Check the tank, make sure the battery is on, that you have power, and so on.”
Cerro Chiang also emphasizes that you should notify your doctor if there is a big change in your saturation level, even if it is above 90 percent. “For example, if you are always at 98 percent and now suddenly you are staying at 92 percent, your doctor needs to know this,” she says.
Gersten notes that she generally only recommends increasing oxygen if a patient is truly hypoxic, which is when there is low oxygen in the body tissues, and that is driving the breathlessness. “I encourage patients to keep a pulse oximeter, and I prefer that a caregiver put it on and help assess the patient,” she says. “Asking someone who is already distressed to interpret their oxygen numbers and adjust their oxygen can create even more stress at a time when the goal is to help them feel calmer and more in control.”
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