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Definition

You were in the hospital to treat your breathing problems that are caused by interstitial lung disease. This disease scars your lungs, which makes it hard for your body to get enough oxygen.

When You're in the Hospital

In the hospital, you received oxygen treatment. After you go home, you may need to keep using oxygen. Your health care provider may have given you a new medicine to treat your lungs.

What to Expect at Home

After you go home, follow instructions on taking care of yourself. Use the information below as a reminder.

Keep Active

To build strength:

• Try walking and slowly increasing how far you walk. Ask your provider how far you should walk.
• Try not to talk when you walk.
• Ride a stationary bike. Ask your provider how long and how hard to ride.

Build your strength even when you are sitting.

• Use small weights or an exercise band to strengthen your arms and shoulders.
• Stand up and sit down several times.
• Hold your legs straight out in front of you, then lower them. Repeat this movement several times.

Ask your provider whether you need to use oxygen during your activities, and if so, how much. You may be told to keep your oxygen above 90%. You can measure this with an oximeter. This is a small device that measures your body's oxygen level.

Talk to your provider about whether you should do an exercise and conditioning program such as pulmonary rehabilitation.

Self-care

Eat smaller meals more often. It might be easier to breathe when your stomach is not full. Try to eat 6 small meals a day. Do not drink a lot of liquid before eating or with your meals.

Ask your provider what foods to eat to get more energy.

Keep your lungs from becoming more damaged.

• If you smoke, now is the time to quit.
• Stay away from smokers when you are out.
• Do not allow smoking in your home (and possibly ask any smokers in your household to quit smoking).
• Stay away from strong odors and fumes.
• Do breathing exercises.

Take all the medicines that your provider prescribed for you.

Talk to your provider if you feel depressed or anxious.

Stay Away From Infections

Get a flu shot every year. Ask your provider if you should get a pneumococcal (pneumonia) vaccine and a COVID-19 vaccine.

Wash your hands often. Always wash after you go to the bathroom and when you are around people who are sick.

Stay away from crowds. Ask visitors who have colds to wear masks or to visit after they are all better.

Make it Easy for Yourself at Home

Place items you use often in spots where you do not have to reach or bend over to get them.

Use a cart with wheels to move things around the house and kitchen. Use an electric can opener, dishwasher, and other things that will make your chores easier to do. Use cooking tools (knives, peelers, and pans) that are not heavy.

To save energy:

• Use slow, steady motions when you do things.
• Sit down if you can when you are cooking, eating, dressing, and bathing.
• Avoid going up and down the stairs many times.
• Get help for harder tasks.
• Do not try to do too much in one day.
• Keep the phone with you or near you.
• After bathing, wrap yourself in a towel rather than drying off.
• Try to reduce stress in your life.

Going Home With Oxygen

Never change how much oxygen is flowing in your oxygen setup without asking your provider.

Always have a back-up supply of oxygen in the home or with you when you go out. Keep the phone number of your oxygen supplier with you at all times. Learn how to use oxygen safely at home.

Follow-up

Your hospital provider may ask you to make a follow-up visit with:

• Your primary care provider
• A respiratory therapist who can teach you breathing exercises and how to use your oxygen
• Your lung specialist (pulmonologist)
• Someone who can help you stop smoking, if you smoke
• A physical therapist, if you join a pulmonary rehabilitation program

When to Call the Doctor

Contact your provider if your breathing is:

• Getting harder
• Faster than before
• Shallow, and you cannot get a deep breath

Also contact your provider if:

• You need to lean forward when sitting in order to breathe easier
• Your oxygen saturation remains below 90% even while using your oxygen
• You have trouble speaking even a few words without being short of breath
• You are using muscles around the ribs to help you breathe
• You are having headaches more often
• You feel sleepy or confused
• You have a fever
• You are coughing up dark mucus
• Your fingertips or the skin around your fingernails is blue

References

Bartels MN, Bach JR. Rehabilitation of the patient with respiratory dysfunction. In: Frontera WR, Silver JK, Rizzo TD, eds. Essentials of Physical Medicine and Rehabilitation. 4th ed. Philadelphia, PA: Elsevier; 2019:chap 150.

Graney BA, Lee JS, King TE. Nonspecific interstitial pneumonitis and other idiopathic interstitial pneumonias. In: Broaddus VC, Ernst JD, King TE, et al, eds. Murray and Nadel's Textbook of Respiratory Medicine. 6th ed. Philadelphia, PA: Elsevier; 2022:chap 90.

Raghu G, Martinez FJ. Interstitial lung disease. In: Goldman L, Cooney KA, eds. Goldman-Cecil Medicine. 27th ed. Philadelphia, PA: Elsevier; 2024:chap 80.

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