If you or someone you know has Pulmonary Fibrosis, you probably also have lots of questions.
Last month we answered some of the most common questions in our FAQs about PF. Now that we’ve reviewed the essentials, we are ready to focus on all the specifics of PF. All answers are based off real conversations from our support group and community forum. We hope that hearing other people’s ideas will inspire you to self-advocate and speak with your own doctors about your unique treatment needs.
Here is a summary of the specific questions that can come up when living with PF.
Please comment below with any additional questions or concerns that you might have.
“I cough frequently and intensely. What can I do to help?”
Here are some ideas to help with the painful, phlegmy cough that occurs with PF:
- Drinking warm tea with honey
- Taking cough medication a few hours before bedtime
- Using a wedged pillow while sleeping or laying down
- Using a nebulizer
- Trying dietary supplements like systemic enzymes
“I can’t control where & when I urinate. Is this common?”
Yes, many people with PF experience urinary incontinence, pelvic pain, or other bladder/bowel dysfunctions. Most often, this occurs due to a lack of coordination between the breathing diaphragm and the pelvic diaphragm. Fortunately, there are ways to improve coordination and find relief from those associated symptoms:
“I struggle with constipation and/or diarrhea. What should I eat to help with this?”
It’s common to have symptoms related to digestion. This can include constipation, diarrhea, and even additional disorders or concerns like IBS and GERD. Here are the suggestions we heard from the community:
- Pay attention to the foods you eat. Here is a list of foods to eat & avoid
- Decide what diet is right for you. Once you know what’s best for you, you can find lots of delicious recipes.
- Eat more foods that naturally contain probiotics
- Remember to stay hydrated
- Ask your doctor about taking probiotics, prebiotics, or other helpful dietary supplements
“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
“It’s so hard to sleep, and when I do I sweat nonstop! Is this related to PF?”
Although sleep is important, PF can make it difficult. In addition to shortness of breath, coughing, and anxiety, many people with PF also experience night sweats. Night sweats could be a result of several things, including:
- a stress response (dealing with a diagnosis of PF and the uncertainty of this disease can be very stressful)
- sweating from the extra effort required to breathe
- side effect of medication(s)
- intolerance to heat as your IPF progresses
- hormonal disturbances.
If the night sweats are accompanied by a productive cough or sputum, it may be worthwhile to get a throat culture to rule out an infection. In case of a bacterial infection, an antibiotic would help. To check whether the night sweats are related to hormonal disturbances, ask your doctor about getting your thyroid levels checked.
No matter the cause, here are some ideas that have helped people with night sweats:
- having a fan blowing near the bed for air circulation
- installing a window AC unit in the bedroom
- drinking plenty of fluids and staying hydrated
“I don’t think my doctor listened to my concerns. What should I do?”
If you aren’t feeling helped or heard by your doctor, you have options! Here are several ideas from our community:
- Learn about what to expect from your pulmonary fibrosis screening. This can help you understand whether certain aspects of your own treatment plan have been neglected. Once you notice something that seems unusual, don’t hesitate to speak up.
- Find specialists to help you. There are many pulmonary experts who can help address your specific questions and concerns. There are also additional types of health care professionals who can help with your treatment plan.
- Bring a trusted friend or family member with you to appointments. This can help you build confidence, stay calm, and ask for help with self-advocacy if needed.
- Keep track of your symptoms, sleep patterns, and other aspects of your health. This can make your goals, needs, and treatment options really clear when you meet with your doctor next time.
- Remember that you deserve the right care for you, and you can switch doctors if you need! You can also incorporate complementary therapies into your approach.
“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.
“No matter what I try, I still have difficulty breathing. Is supplemental oxygen the right choice for me?”
Many people use oxygen therapy as part of their treatment plan. To help them breathe, they may use supplemental oxygen at night, during exercise/activity, or all day long. Depending on your lifestyle, your doctor may either recommend an oxygen tank or an oxygen concentrator for you. If they haven’t discussed oxygen therapy with you yet, you can read about the choices here and the safety considerations here. You can also learn about potential complementary therapies here. Then, feel free to bring up the conversation yourself. Self-advocacy can make a big difference in your progress and quality of life!
“I heard that some people can qualify for a lung transplant. Could that happen for me?”
Most people in our community start with treatment options like medication, pulmonary rehabilitation, oxygen therapy, and certain lifestyle changes. However, for some people, these treatments cease being effective. In certain cases, you may be eligible for a lung transplant. Click here to learn more about the eligibility criteria, the process for receiving a lung transplant, and the path to recovery afterwards.
“I feel so 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.