A diagnosis of idiopathic pulmonary fibrosis (IPF) can be overwhelming. While everyone experiences IPF differently, my hope is that this letter will help you better understand IPF and prepare you for the next conversation with your doctor.
Although there isn’t a current cure for IPF, the symptoms are treatable. Here are some tips to improve your quality of life following an IPF diagnosis.
The first step to IPF management is to stop smoking. Avoid breathing smoke or dust whenever possible, as they can irritate your lungs. This includes being around other people who smoke. Even cooking over a grill (gas, wood, or charcoal) can set off a coughing spell.
Also, take any environmental allergies you have into consideration. If you’re allergic to your neighbor’s indoor cat, try inviting them to your house rather than visiting theirs. Think about your environment and how to decrease breathing in pollution, dust, allergens, or smoke.
Practice preventative health care. Infections like the flu and pneumonia can be more serious if you have IPF. Be sure to get the flu shot every year and receive the pneumonia vaccine once. Talk to your doctor about vaccines that would benefit you.
You should also try to avoid crowds during influenza season. Take precautions, like wearing a mask or telling others, “I would hug you or shake your hand, but with the flu virus going around, I really shouldn’t take a chance!” It may sound silly, but people will understand.
If you do get sick, get treatment right away. Any illness that affects the lungs can make IPF symptoms worse. If needed, your doctor will prescribe you steroids to decrease inflammation or antibiotics to treat an infection.
Sometimes, simply swallowing food or water can set off a round of coughing. If you find yourself coughing during a meal, slow down and take small bites while eating. You may also need to take slow, shallow breaths between bites to help calm your already irritated lungs. Have a small sip of water between bites. Be mindful about eating in general and find what works for you.
Acid reflux from the stomach can exacerbate symptoms of IPF. If small amounts of acid come up your esophagus, it can get into your lungs and cause inflammation. Your doctor may treat any gastroesophageal reflux with antacids or acids blockers to help prevent this.
Sitting up straight for at least 30 minutes after meals can also help with preventing acid reflux. Also, consider avoiding hot, spicy foods.
IPF and some of its treatments can make you feel tired. If a power nap makes you feel better, go for it. But if it interferes with your normal sleep cycle, it might not be the best plan. If you feel yourself drifting off when you don’t want to, get up and do something to make yourself move around a bit, such as taking a short walk or even washing some dishes. Usually, the feeling will pass.
Sleep apnea, particularly obstructive sleep apnea, can also increase breathing problems related to IPF. The ability of your lungs to get oxygen into your body is already impaired. This only gets worse if you have trouble breathing when trying to sleep.
Talk to your doctor about sleep apnea if you have excessive daytime sleepiness, snore loudly, or notice short periods of time when you stop breathing during sleep. Identifying some of these symptoms may require asking a sleep partner to tell you if they notice them.
The simplest things can often trigger a coughing spell. The wind blowing hard may be enough to set you off. If you find this applies to you, try wrapping a scarf around your mouth and nose during cold, windy weather.
Even sudden movements, like rolling over in bed, can set off a round of coughs. Take your time and move slowly to minimize irritation of your airways.
We all know laughing is good medicine, but it may launch you into a long coughing spell. Practice smiling broadly rather than taking a big breath and laughing out loud.
People with IPF often experience shortness of breath, tiredness, and muscle fatigue. These things tend to take away the joy, or quality, of life.
Pulmonary rehabilitation can help you learn symptom management and exercises to ease breathing. A team of doctors will develop a plan for you. These programs have shown to improve overall quality of life for people living with IPF. If your doctor hasn’t brought it up, ask them about it.
While a diagnosis of IPF can be daunting, it’s important to keep a positive attitude and proactive approach to controlling your symptoms.
Be mindful about your symptoms, any side effects of medication, and your quality of life. Remember, this is your body and your life, and you are an active participant in the decision-making process. Open, honest communication with your medical team will help find the best plan for you.
Dr. Deborah Weatherspoon is an advanced practice nurse. She graduated with a PhD from the University of Tennessee in Knoxville. She is currently a university nursing educator and has authored multiple publications. She has also presented at national and international levels on medical and leadership issues. She enjoys walking, reading, traveling to new places, and spending time with her family.