We understand how challenging it is to navigate PF and all the information available. Because of this, we’ve compiled a list of FAQs about PF – all based on real conversations between people in our support group and community forum. Please feel free to comment below with your own questions!
Question: What is PF, and is it different than IPF?
Answer: Pulmonary fibrosis (or PF) is a condition characterized by thickening and scarring of the tissue in the lungs. It impacts breathing, oxygen concentration in the blood, and many other aspects of a person’s lifestyle and health. Sometimes, the cause of PF is known – such as environmental exposures, genetics, or side effects from certain medications (like chemotherapy drugs, heart medications, or antibiotics). Often, however, the cause is unknown. When the exact cause of the PF is unknown, it is called Idiopathic Pulmonary fibrosis (or IPF). To learn more, visit https://pulmonaryfibrosisnow.org/2018/07/28/what-are-different-types-pulmonary-fibrosis/
Question: What are the symptoms of PF?
Answer: The most common symptoms of PF are shortness of breath and a dry, hacking cough due to the scarring of the lungs. It can also cause muscle aches and sore joints. People with pulmonary fibrosis who experience pain are often suffering from another problem like an injury to the rib cage or back from severe coughing, or from other parts of the body due to a lack of oxygenated blood flow. Additional symptoms of PF include severe fatigue, weight loss and clubbing of the fingertips. Pulmonary hypertension, cardiac failure, respiratory failure, and lung cancer can all be complications of pulmonary fibrosis. To learn more, visit https://pulmonaryfibrosisnow.org/2018/10/06/is-pulmonary-fibrosis-painful/.
Question: I think I might have PF; how is it diagnosed?
Answer: Unfortunately, PF can go undiagnosed or initially be misdiagnosed. Before receiving a diagnosis for Pulmonary Fibrosis (PF), many people receive treatment for asthma, pneumonia, or bronchitis instead. Idiopathic pulmonary fibrosis (IPF) is particularly hard to diagnose because there are many other interstitial lung diseases that mimic it. Many potential causes must be considered and ruled out before IPF can be diagnosed. Knowing about risk factors and early symptoms of pulmonary fibrosis is the key to getting diagnosed with the disease as soon as possible. Here are some tips:
- First, determine whether you’re at risk for developing PF. A complete list of risk factors is available here: https://pulmonaryfibrosisnow.org/2018/06/13/the-warning-signs-early-symptoms-of-pulmonary-fibrosis/.
- Next, notice if you’re experiencing these early symptoms: shortness of breath, a dry cough, unexplained weight loss, fatigue, muscle & joint aches/pains, clubbing of fingers & toes. If so, see your doctor right away to avoid long-term complications!
- Then, you can connect with or be referred to a lung specialist known as a pulmonologist. Your pulmonologist will conduct a non-invasive screening which includes reviewing your health history, giving a physical exam, and ordering relevant testing (such as imaging tests, lung function tests, blood tests, or tissue tests). To learn more, visit https://pulmonaryfibrosisnow.org/2020/01/17/what-to-expect-during-a-pulmonary-fibrosis-screening.
Question: I have a PF diagnosis – what’s the prognosis?
Answer: Unfortunately, with the current treatments available for PF, scarring of the lung tissue is irreversible. No matter how scary it seems, there are still helpful treatment options – and we have heard many encouraging and empowering stories in our community forum. The estimated life expectancy at the time of diagnosis used to be 3-5 years, but it’s important to note that many individuals have lived much longer due to advances in modern medicine. Plus, the actual rate of progression varies drastically from one person to the next. Some people may experience mild to moderate symptoms that worsen slowly over the course of several years, some may experience “acute exacerbation” in which their symptoms worsen quickly over the course of days or weeks, and others experience extended periods of stability followed by periods of more rapid disease progression. To learn more, visit https://pulmonaryfibrosisnow.org/2019/05/22/how-quickly-does-pulmonary-fibrosis-progress/.
Question: What treatments are available for PF?
Answer: No matter your prognosis, there are still possibilities for treating PF. For example, a couple FDA-approved medications can ease breathing difficulties and slow the progression of the disease. Oxygen therapy with supplemental oxygen and pulmonary rehabilitation are also common ways to alleviate the disease’s symptoms and improve lung capacity and endurance. In certain severe cases, lung transplants may be an option. Depending on the symptoms you experience, your treatment plan could also incorporate natural herbs and dietary supplements, nutrition improvements, exercise, and mental health support via individual or group therapy, mindfulness, and/or meditation. To learn more, visit https://pulmonaryfibrosisnow.org/2019/10/07/4-ways-to-take-control-of-your-chronic-illness-treatment/.
Question: Are there any additional ways to fight PF?
Answer: Yes! There are many ways to fight PF in your day-to-day life. Here are a few places to start:
- For help with the aching joints and muscles: https://pulmonaryfibrosisnow.org/2019/10/01/ipf-symptom-deep-dive-3-ways-to-improve-aching-joints-and-muscles/.
- For tips on increasing the oxygen levels in your home: https://pulmonaryfibrosisnow.org/2019/04/11/3-ways-to-increase-levels-of-oxygen-in-your-home/.
- For ways to manage the impact of weather on your symptoms: https://pulmonaryfibrosisnow.org/2019/09/12/4-ways-to-manage-interstitial-lung-disease-in-hot-weather/.
- For advice from others with PF: join us at our recurring support groups on Zoom.
At PF NOW!, we believe that a healthy lifestyle improves your quality of life and may slow the progression of PF. To learn more, visit https://pulmonaryfibrosisnow.org/2018/06/05/ways-to-fight-pulmonary-fibrosis/.
Question: How do I find the right doctors & care team for me?
Answer: It’s important to advocate for the care you deserve in consideration of your unique needs. You have options for where to find care and for which health professionals to see. From your primary care provider to respirologists, clinical professionals, medical laboratory professionals, pulmonary rehabilitation professionals, there can be a whole community of people to help you. If you’d like, your team can also involve others trained in health & wellness, such as acupuncturists, nutritionists, and physical or occupational therapists. To learn more, visit https://pulmonaryfibrosisnow.org/2018/09/26/health-care-providers-youll-see-on-your-pulmonary-fibrosis-journey/.
Question: What lifestyle changes should I expect, and how can I cope with them?
Answer: When you have PF, the day-to-day tasks that used to be easy might take much longer to complete – whether that’s walking, cooking, getting dressed, or doing household chores. With PF, you can expect to need frequent breaks and lots of rest. You might notice feelings of depression and anxiety. No matter what challenges or changes you face, remember there is no shame in getting help from friends, family, or caregivers – they are here to support you. Plus, there are many realistic ways to boost your lifestyle and notice measurable improvements to your quality of life.
For individualized support with monitoring your progress, try conducting a 6-minute walk test and measuring your oxygen saturation with a pulse oximeter. To receive emotional support from people with PF, please join us on Zoom for our next virtual support group. To learn more, visit https://pulmonaryfibrosisnow.org/2019/09/23/what-lifestyle-changes-should-you-expect-with-a-pulmonary-fibrosis-diagnosis/.
Question: What kind of exercise can I do with PF?
Answer: Please consult with your doctor first. Most likely, they will be strongly in favor of you staying active. When you have difficulty breathing, it can seem like exercise is impossible. Even so, there are specific exercises you can do to strengthen and support your lung health, increasing the efficiency of your breathing. You can learn these exercises by signing up for pulmonary rehabilitation.
There are also activities you can do from the comfort of home, such as balloon breathing and other common breathing exercises. If you’re experiencing symptoms like incontinence, you can try these simple exercises. Just remember: though exercise and regular physical activity is an important step to take, it’s important to get enough rest too.
To learn about stress-reducing activities that people with PF can enjoy, visit https://pulmonaryfibrosisnow.org/2019/04/03/22-hobbies-for-people-with-chronic-illness/ and https://pulmonaryfibrosisnow.org/2020/03/31/15-hobbies-for-people-with-chronic-illness-during-times-of-social-distancing-and-quarantine/.
Question: What can my friends & family do to support me?
Answer: Friends and family often want to help but don’t know how to. Here are a few ways they can learn how to support someone with PF:
- Friends and family can learn about the basics of PF by reading our educational content and posting questions in our community forum. They can also learn about the struggles of PF and hear testimonials of what PF feels like. The more they can understand and empathize, the better they can support.
- Many people with PF need help finding resources, making it to important appointments, and even advocating for themselves at appointments. Tips to help in these cases are available here: https://pulmonaryfibrosisnow.org/2018/08/01/how-support-friend-pulmonary-fibrosis/.
- People with PF may need a caregiver. Consider becoming a paid caregiver, or – if the person with PF already has a caregiver – try thanking their caregiver and helping to prevent caregiver burnout. To learn more, visit https://pulmonaryfibrosisnow.org/2020/05/04/interview-with-a-pulmonary-fibrosis-caregiver/.
Question: Where can I find information on the safety of COVID-19 vaccines for people with PF?
Answer: We recommend that you reach out to your pulmonologist or primary care physician to ensure that the vaccine is safe for you. The vaccines have undergone rigorous and efficient testing in clinical trials. They have been demonstrated to be safe and effective in preventing or limiting the development of severe Covid-19 illness and death. As per the recommendations issued by the CDC, the benefits of Covid-19 vaccination far outweigh the risks. To learn more, visit https://pulmonaryfibrosisnow.org/2021/03/25/vaccine-for-covid-19/.