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 the condition, 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. But a little bit of planning can actually make it easier to manage the condition. It’s best to start keeping a daily, weekly, or monthly calendar and filling 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 manage 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 professional.
Plan to see your doctor about three to four times per year. Record these visits on your calendar so you do not forget about them. Also, keep track of any additional appointments you have with other specialists for tests and treatments.
You can prepare for each visit ahead of time by writing up a list of questions and concerns for your doctor.
Following your treatment regimen will help manage your symptoms and disease progression.
There are two drugs approved to treat IPF: nintedanib (Ofev) and pirfenidone. You’ll take your medication one to three times each day. Try using your calendar as a reminder so you do not 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 do not 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 within your ability level.
Getting 8 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 time every day, even on weekends.
To help you fall asleep at the appointed hour, do something relaxing, such as:
- reading a book
- taking a warm bath
- practicing deep breathing
- meditating
IPF can make your body less tolerant of temperature extremes. During the summer months, plan your activities for the early morning when the sun and heat are not as intense. Schedule afternoon breaks at home in the air conditioning if possible.
Large meals are not 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.
If 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 do not become isolated and lonely. If you cannot get out of the house, you can set up phone or Skype calls with friends or relatives or connect via social media.
If you smoke, 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 medications to help decrease your urge to smoke or use nicotine replacement products, like a patch, gum, or nasal spray.
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 do not already participate in a support group, you can find one through the Pulmonary Fibrosis Foundation.