Living with PF
Whether you’ve had PF for years or were recently diagnosed, living with PF can feel complicated or confusing at times. This page provides tips for coping, specifies safe ways to stay active, and encourages individuals with PF to build a support system. Remember, we’re here to help! Please don’t hesitate to contact us with any additional concerns.
What lifestyle changes should I expect, and how can I cope with them?
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.
What if I feel hopeless? Will there ever be a cure to this disease?
Having PF can cause or exacerbate feelings of hopelessness, grief, depression, anxiety, and more. Here are several resources to help:
- How to cope with a PF diagnosis
- How to fight PF right now
- How to take control of your treatment
- How to connect with people who can relate
- How to be supported by friends
- How to receive support from people with PF
More and more people are becoming aware of PF, and there are many dedicated researchers working to find a cure. PF NOW!’s study specifically for PF patients is ongoing, but we can’t wait to share the results with you. To stay updated on our latest research developments, please sign up for text or email alerts.
What can my friends & family do to support me?
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.
It’s really difficult to stay active. What kinds of exercise can I actually do?
When it’s already hard to move around the house, the thought of exercise can seem daunting, exhausting, or even impossible. Still, many people with PF have found safe ways to exercise – as well as lasting benefits physically, psychologically, and emotionally. Here are some ways to stay physically active when you have PF:
- Consult with your doctor to determine what kinds of exercise you can tolerate, what tools can help (such as the AirPhysio), and how to monitor your progress and health
- Sign up for pulmonary rehabilitation
- Practice seated breathing exercises
- Blow up a balloon
- Try yoga (even if it’s only the seated poses)
- Go on short walks outside
Just remember: though exercise and regular physical activity is an important step to take, it’s important to get enough sleep and rest too. Many restful or stress-reducing activities can be safe for people with PF, even during times of social distancing and quarantine.
I’m sensitive to certain climates & temperatures. How can I manage my symptoms wherever I am living or visiting?
Whether you’re moving, traveling, or experiencing the changing seasons, you might be very sensitive to the environment around you. Here are some tips:
- How to breathe easier indoors: https://pulmonaryfibrosisnow.org/2019/04/11/3-ways-to-increase-levels-of-oxygen-in-your-home/
- How to manage in the heat: https://pulmonaryfibrosisnow.org/2019/09/12/4-ways-to-manage-interstitial-lung-disease-in-hot-weather/
- How to understand and handle inflammation: https://pulmonaryfibrosisnow.org/2021/07/11/understanding-inflammation-and-pulmonary-fibrosis/
- How to cope with the pains and changes: https://pulmonaryfibrosisnow.org/2021/04/26/guided-meditations-to-help-with-pain/
Our Facebook group has hundreds of people from all around the world. Please join to connect with people who could have tips for your specific city, state, or country.
- 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, and 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).
