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.

How do I find the right doctors & care team for me?

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, and 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.

“I don’t think my doctor is helping to develop a treatment plan. 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. 

1. 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/. 
2. 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!
3. 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).