If you’re living with idiopathic pulmonary fibrosis (IPF), you know how unpredictable the disease can be. Your symptoms can change dramatically from month to month — or even from day to day. Early on in your disease, you might feel well enough to work, exercise, and go out with friends. But when the disease flares up, your coughing and shortness of breath can be so severe that you might have trouble leaving your home.
The erratic nature of IPF symptoms makes it hard to plan ahead. Yet a little bit of planning can actually make it easier to manage your disease. Start keeping a daily, weekly, or monthly calendar, and fill it with these must-do tasks and reminders.
IPF is a chronic and progressive disease. Your symptoms can change over time, and treatments that once helped control your shortness of breath and coughing might eventually stop being effective. To manage your symptoms and prevent complications, you’ll need to set up a schedule of visits with your healthcare provider.
Plan to see your doctor about three to four times a year. Record these visits on your calendar so you don’t forget about them. Also keep track of any additional appointments you have with other specialists for tests and treatments.
Prepare for each visit ahead of time by writing up a list of questions and concerns for your doctor.
Staying faithful to your treatment regimen will help control your symptoms and manage your disease progression. A few drugs are approved to treat IPF, including cyclophosphamide (Cytoxan), N-acetylcysteine (Acetadote), nintedanib (Ofev), and pirfenidone (Esbriet, Pirfenex, Pirespa). You’ll take your medicine one to three times each day. Use your calendar as a reminder so you don’t forget a dose.
Though you might feel too breathless and fatigued to exercise, staying active can improve these symptoms. Strengthening your heart and other muscles will also help you accomplish your daily tasks more easily. You don’t need to do a full hour-long workout to see results. Walking for even a few minutes a day is beneficial.
If you’re having trouble exercising, ask your doctor about enrolling in a pulmonary rehabilitation program. In this program, you’ll work with an exercise specialist to learn how to get fit safely, and within your ability level.
Eight hours of sleep each night is essential to feeling your best. If your sleep is erratic, write a set bedtime on your calendar. Try to get into a routine by going to bed and waking up at the same times every day — even on weekends.
To help you fall asleep at the appointed hour, do something relaxing like reading a book, taking a warm bath, practicing deep breathing, or meditating.
IPF can make you less tolerant of temperature extremes. During the summer months, plan your activities for the early morning, when the sun and heat aren’t as intense. Schedule afternoon breaks at home in the air conditioning.
Large meals aren’t recommended when you have IPF. Feeling too full can make it hard to breathe. Instead, plan out several small meals and snacks throughout the day.
Everyday tasks like house cleaning and cooking can become increasingly difficult when you have trouble breathing. When friends and family members offer to help, don’t just say yes. Schedule them into your calendar. Set half-hour or hour-long time slots for people to cook you meals, go grocery shopping for you, or drive you to doctor visits.
Even when you feel under the weather, it’s important to stay socially connected so you don’t become isolated and lonely. If you can’t get out of the house, set up phone or Skype calls with friends or relatives, or connect via social media.
A quit-smoking date
If you’re still smoking, now is the time to stop. Breathing in cigarette smoke can worsen your IPF symptoms. Set a date on your calendar to stop smoking, and stick with it.
Before your quit date, throw out every cigarette and ashtray in your home. Meet with your doctor to get advice on how to quit. You can try medicines to help decrease your urge to smoke, or use nicotine replacement products like the patch, gum, or nasal spray.
Support group meetings
Getting together with other people who have IPF can help you feel more connected. You can learn from — and lean on — other members of the group. Try to attend meetings on a regular basis. If you don’t already participate in a support group, you can find one through the Pulmonary Fibrosis Foundation.