“While cough and shortness of breath are common symptoms of a passing virus, these same symptoms, when chronic, can be indicative of pulmonary fibrosis,” said Sonye Danoff, MD, PhD, senior medical advisor for the Care Center Network and Patient Registry for the Pulmonary Fibrosis Foundation (PFF). “Recognizing symptoms and taking action early can enable at-risk patients, caregivers and healthcare providers to ensure more accurate and timely diagnoses, improve patient outcomes and maximize treatment options and quality of life.”
Pinpoint these Symptoms and Risk Factors
PF is a progressive and debilitating lung disease that, over time, leads to scarring of the lungs and has no known cure. While more than 50,000 new cases of PF are diagnosed annually, the disease remains largely unknown. In fact, a vast majority (86%) of Americans do not know the symptoms of PF*, according to a recent survey from the PFF.
It is important to pinpoint PF symptoms because they are very similar to many common illnesses, which can make PF difficult to diagnose – even more so during cold and flu season. No matter what, talk to your doctor if you are experiencing any of the following symptoms, which, when chronic, may be early warning signs of PF:
- Shortness of breath: As the lungs develop more scar tissue, symptoms worsen. Shortness of breath initially occurs with exercise, but as the disease progresses one may become breathless while taking part in everyday activities, such as showering, getting dressed, speaking on the phone or even eating.
- A dry, persistent cough: The typical PF cough is dry – there is no sputum or phlegm. Instead, it may sound as if one is constantly trying to clear one’s throat. While cough following an infection can last an average of 18 days, if your dry cough lasts for months, it can be a telltale sign of PF.
- Fatigue: If it becomes difficult and exhausting to do common tasks or activities which you had previously been able to complete without issue, you should point it out to your doctor right away.
PF is more likely to occur in those who are 60 years and older and in individuals with a history of smoking. Additional factors that can put tens of thousands of Americans at higher risk for the disease include a family history of interstitial lung disease (ILD), environmental and occupational exposures and the use of certain medications.
If you have symptoms or risk factors, the first step is to speak with your healthcare provider. Take notes about your symptoms and any risk factors you might have to help your doctor pinpoint PF. This is important because early diagnosis is key to maximizing treatment options and with a lesser known disease like PF, advocating for your health is crucial. To help you start that conversation with your doctor, a downloadable Pulmonary Fibrosis Risk List is available at AboutPF.org.
The Road to Diagnosis
“For many patients, the road to diagnosis can be long and difficult,” said Dr. Danoff. “Although many of PF’s symptoms are seen with seasonal colds and more common diseases such as COPD, asthma and heart disease, it is important to consider PF.”
There are three indicators of PF. Doctors use these indicators to recognize that someone has PF:
- Stiff lungs: Scar tissue and inflammation make your lungs stiff. Stiff lungs are hard to stretch, so your breathing muscles have to work extra hard just to pull air in with each breath, triggering a feeling of breathlessness. To determine how easily a patient becomes breathless, doctors may ask questions about their routine – if talking on the phone, taking the stairs or exercise leaves them short of breath.
- Low blood oxygen: Scar tissue blocks the movement of oxygen from the inside of your air sacs into your bloodstream. For many people living with PF, oxygen levels are only reduced a little bit while resting, but their oxygen levels drop quite a bit during exercise.
- “Crackles” lung sounds: During the physical examination, doctors will note how the lungs sound. Your doctor may tell you that “crackles” were heard in your lungs, which sounds similar to Velcro being pulled apart. Some people with PF don’t have crackles, but most do.
If you have these indicators, your doctor may suggest some specific testing including breathing tests (also called pulmonary function testing, PFT) and a high resolution chest CT scan. These tests along with a careful discussion of your medical history and medications can help make the diagnosis of PF.
Newly Diagnosed Patients
If further action needs to be taken, it’s important to find a local pulmonologist. To assist you in identifying pulmonologists closer to home, the PFF established the PFF Care Center Network, which includes 68 medical centers nationwide with experience in the diagnosis and treatment of PF. A knowledgeable team of PF experts will help make sure you receive an accurate diagnosis and the most up-to-date treatments and management recommendations. Dr. Danoff also encourages patients to take advantage of the PFF’s helpful resources, including support groups and more, available here.
As we welcome a fresh start in 2021, it’s time to take control of your health and pinpoint any symptoms you are experiencing or concerns about your health. The New Year is a great time to resolve to speak with your physician, especially if you have delayed doctors’ visits due to the pandemic. Listening to your body and prioritizing your health are essential components to maintaining good health and improving quality of life for years to come.
To learn more about PF risk factors, symptoms and more, please visit www.AboutPF.org.
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