Patient Resources
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Pulmonary Fibrosis – The Basics
What does a diagnosis of pulmonary fibrosis mean for you? What can you expect? These resources introduce pulmonary fibrosis.
PF Warriors Private Group
Join our private group for daily interaction with other members.
Look up abbreviations and medical terms that are new to you.
What is interstitial lung disease?
John Hopkins’s website has educational information.
Lung Health Basics Fact Sheet
This 4-page fact sheet defines terms, basic health tests, and other basics.
What is IPF?
Learn about IPF from a conversation between a person living with IPF, a caregiver, a pulmonologist, and a clinical educator.
About Hypersensitivity Pneumonitis
hpLung.com is a free, online repository of potential causes of HP, one form of pulmonary fibrosis, as identified within the published medical literature.
Pulmonary Fibrosis Journey
Kim Fredrickson describes her day-to-day life with pulmonary fibrosis. This is a great read for patients and caregivers looking for ways to cope with pulmonary fibrosis.
Diagnosis
Accurate diagnosis is especially critical to your health and quality of life.
How is Pulmonary Fibrosis Diagnosed?
The American Lung Associates explains how pulmonary fibrosis is diagnosed and explains the tests that you may undergo.
Newly Diagnosed? Do This First
A PF Warriors blog recommends the first steps a newly diagnosed patient should take.
Find an ILD Care Center Network/Center of Excellence
The Pulmonary Fibrosis Foundation lists sites in the United States that meet its requirements in diagnosing and treating pulmonary fibrosis, also known as centers of excellence.
How do Doctors Diagnose Pulmonary Fibrosis?
Has your doctor ordered a high-resolutions CT scan as a diagnostic test?
Pulmonary Function Tests
An explanation of the pulmonary function tests and the different measurements that can be taken, from Johns Hopkins.
Centers of Excellence – Find a doctor
These centers of excellence listed by the ILD Collaborative provide state-of-the-art treatment by ILD specialists.
Treatment
While there is currently no cure for pulmonary fibrosis, there are treatments.
Pulmonary Fibrosis Medications
The American Lung Association presents the US FDA approved medications available for pulmonary fibrosis.
Find an ILD Care Center Network/Center of Excellence
The Pulmonary Fibrosis Foundation lists sites in the United States that meet its requirements in diagnosing and treating pulmonary fibrosis, also known as centers of excellence.
Centers of Excellence – Find a doctor
These centers of excellence listed by the ILD Collaborative provide state-of-the-art treatment by ILD specialists.
Help with Drug Costs
Find grants that provide financial assistance for expensive drugs.
Effects of Nintedanib on Symptoms
Based on changes in L-PF questionnaire scores, nintedanib reduced worsening of dyspnoea, fatigue and cough and the impacts of ILD over 52 weeks in patients with PPF.
Managing Side Effects of OFEV
PF Warriors’ best tips for managing the common side effects while taking OFEV.
Participating in Clinical Trials
The Pulmonary Fibrosis Foundation introduces how clinical trials work and how pulmonary fibrosis patients may participate.
Find a Clinical Trial
The US Government provides a way to search for clinical trials around the world.
Supplemental Oxygen
Oxygen is vital to life, health, and organ function. At some point, nearly every pulmonary fibrosis patient uses supplemental oxygen to maintain health.
Why Did My Provider Prescribe Supplemental Oxygen?
This 6-page brochure answers basic questions about oxygen prescriptions.
Pulse Oximeters and Oxygen Concentrators
The US FDA explains oxygen concentrators and pulse oximeters used at home.
Pulse Oximeter Accuracy and Limitation: FDA Safety Communication
The US FDA bulletin addresses concerns about oximeter accuracy for people with dark skin.
Getting Started with Oxygen Therapy
This 2-page summary tells what to do when you get an at-home oxygen concentrator.
Getting Started with a Home Oxygen Concentrator
This short video explains the basics of using and caring for a home oxygen concentrator.
You and Oxygen Therapy
This online guide from the American Thoracic Society has loads of short videos and animations about oxygen topics.
Complete Guide to Oxygen Therapy
This 35-page document explains the types of oxygen therapy and how to pay for it in the US.
Oxygen Manifesto Part 1
Advice from three expert respiratory therapists, led by Noah Greenspan, about when and how to use supplemental oxygen.
Oxygen Manifesto Part 2
Learn about the devices that deliver supplemental oxygen.
Oxygen Manifesto Part 3
Learn advanced tips and tricks from respiratory experts.
Home Oxygen Safety Poster
Warnings and guidelines for using oxygen safely at home.
Medicare Coverage for Oxygen Therapy
This site explains US Medicare coverage for supplemental oxygen for 2022.
Medicare: Oxygen Equipment & Accessories
This site explains what accessories US Medicare will cover related to oxygen equipment.
Medicare Billing Guideline Changes 2019
This 3-page document outlines changes to Medicare billing for supplemental oxygen.
Medicare Patient’s Oxygen Rights
This 4-page document outlines the rights of US Medicare patients who use supplemental oxygen.
Portable Oxygen Concentrators
People who use supplement oxygen need to be mobile, able to exercise, and go out. Portable oxygen concentrators are a godsend, but select and purchase them with care, as you would any life-sustaingin medical device.
Doctors Warn About Portable Oxygen Concentrators Sold Online
The FDA, doctors, and lung associations warn consumers that over-the-counter oxygen concentrators sold online should not be used for pulmonary fibrosis or other lung disease.
Portable Oxygen Concentrators: Benefits and Limitations
This 2-page document outlines the benefits and limitations of POC. Produced by the American Thoracic Society.
Do Over-the Counter Portable Oxygen Concentrators Actually Work?
Results of a COPD Foundation Study found that over the counter oxygen concentrators are not suitable for anyone needing long-term oxygen therapy.
Guide to Portable Oxygen Concentrators
This site from runningonair.net has a helpful chart that shows how many liters per minute each POC is capable of delivering.
A Guide to Portable Oxygen Concentrators
This 27-page document from the American Association of Respiratory Care describes portable oxygen concentrators and how to select one.
Oxygen Manifesto Part 2
Learn about the devices that deliver supplemental oxygen. Repeated from the Supplemental Oxygen section because of critical facts about portable concentrators.
Sell or Refurbish a Portable Oxygen Concentrator
Learn about BuyBack or Trade In programs for your used portable oxygen concentrator.
Exercise & Pulmonary Rehab
Proper exercise approved by your doctor has many benefits, both physical and mental. These programs are developed especially for people with chronic lung disease.
Pulmonary Wellness Bootcamp
Register for a free, online pulmonary rehab program at this Pulmonary Wellness Foundation site.
What is pulmonary rehab?
Read about pulmonary rehab and learn how to find a program near you.
Answers to Frequently Asked Questions About Exercise and PF
The Canadian Pulmonary Fibrosis Foundation provides basics of why and how to begin exercise with pulmonary fibrosis.
Treadmill 101
Dr. Noah Greenspan explains how to develop the absolute best treadmill protocol for you so that you can achieve the very best results in every workout.
QiGong for Lung Health
The Rehabilitative Qigong for Pulmonary Health program blends ancient self-healing practices with modern rehabilitation to help you breathe deeply, live longer, and find greater meaning in life.
What to do when Pulmonary Rehab is Unavailable
This one-page document gives you additional resources.
Fitness for Breath Exercise Program
Free, online exercise classes from the Lung Health Foundation.
Breathe Right Exercise Class
Free, online exercise classes from the BC Lung Foundation.
Travel
Living with a chronic disease does not prohibit travel. With some planning and precautions, you can visit family, take a cruise, and visit places you want to go.
Traveling with Lung Disease
A respiratory therapist talks about the considerations for traveling in this 15-minute video.
Transporting Oxygen Cylinders in a Vehicle
Two pages of safety information for carrying tanks in a vehicle
High Altitude Simulation Test
The National Jewish Health organization explains what a HAST test is and why you may need one.
Five Steps for Successful Flying with Oxygen
The American Lung Association provides tips for air travel.
Trip Planning Guide
A 23-page guide from the CHEST Foundation has information on traveling with supplemental oxygen.
Holidaying with Pulmonary Fibrosis
Visit this website to find tips for planning to travel.
Air Travel when you have a Lung Condition
The US National Institute of Health offers guidelines for traveling by air.
FAA List of Approved Portable Oxygen Concentrators for Air Travel in the US
FAA regulations and approved POCs for US air travel
Symptom Management
Living with pulmonary fibrosis means living with its symptoms. Here are tips for managing some of them
Clearing the Air about Cough
Experts for Action for Pulmonary Fibrosis discuss cough severity in pulmonary fibrosis, mechanisms of cough, possible treatments and future trials.
Check for Drug Interactions
WebMD‘s tool allows you to look up possible drug interactions of your medications. Always consult your doctor or pharmacist for the best, up-to-date information.
How do I Manage Symptoms and Side Effects of PF?
The American Lung Association has tips for managing key symptoms of pulmonary fibrosis.
Get Pallliative Care
The Center to Advance Palliative Care has handouts, tools, and a directory to help you understand the option and find a doctor near you.
Lung Protection
Avoiding irritants, viruses, and infection help you protect your lungs. Learn what to avoid and how to avoid it.
Protecting your Lungs from Pollution
Dr. Meilan Han talks to PF Warriors about protecting your lungs from further damage caused by air pollution.
COVID-19 Resources
The American Thoracic Society provides a variety of free resources. Notable is the flyer on Managing Your Chronic Lung Disease During the COVID-19 Pandemic.
Considering the COVID Booster
Bill Vick asks an expert pulmonologist about getting a COVID -19 booster shot.
Breathing Lessons: A Doctor’s Guide to Lung Health
Dr. MeiLan K. Han, a leading pulmonologist and a national spokesperson for the American Lung Association, takes readers on a fascinating tour of this most vital organ, the lung.
Lung Transplant
Lung transplant practices vary widely between lung transplant centers. Even more variations between countries. For more specifics, talk to your doctor or transplant center.
A lung transplant is a surgery to remove diseased lungs and replace them with lungs from a deceased donor with healthy lungs.
Recipient Selection for Lung Transplantation
If your healthcare provider thinks you may be a good candidate for lung transplantation, you will be referred to a lung transplant center. The lung transplant team does a full evaluation that starts with looking at why you need a lung transplant. This booklet tells you what to expect.
Life After Lung Transplant
This booklet provides an overview of what to expect after a successful lung transplant.
Bronchiolitis Obliterans Syndrome (BOS) Following Lung Transplant
BOS is a lung problem that can occur after lung transplantation and is the most common form of chronic lung transplant rejection.
Emotional Coping and Stress
Getting diagnosed with pulmonary fibrosis is a long and frustrating process. These and other emotions are typical during a chronic illness. Here are some strategies for dealing with them.
Guided Meditation for Reducing Stress, Sleep, Anxiety, or Caregiving
Select one of several guided meditations in English or Spanish to relax.
Smartphone app helps with anxiety of pulmonary fibrosis
Learn about a smartphone app that applies cognitive behavioral therapy for to improve your life.
Almee for iPhone or iPad
Almee for Android
Depression and Pulmonary Fibrosis
Learn to be aware of your feelings and when to see a healthcare professional.
Managing Your Emotions
The Lungs & You website offers tips for those diagnosed with lung disease.
Practicing Gratitude to Improve Well-Being
The National Institute of Health has tips for practicing gratitude to improve your well-being.
Coping with Stress and Emotions from Pulmonary Fibrosis
Tips for coping with the common stress that accompanies pulmonary fibrosis.
Mental Health and Pulmonary Fibrosis
Coping strategies for stress and anxiety due to pulmonary fibrosis.
Nutrition
Healthy nutrition is important to your overall health. Some foods have beneficial effects on your well-being. Some foods and additives in medicines can cause discomfort and side effects.
Find the Ingredients List for a Drug
This National Institute Health‘s site lets you find the ingredient list for any drug via a National Drug Code (NDC). The NDC is a 10 or 11 digit number that identifies a drug. The NDC is sometimes found on the prescription label.
Nutrition for Pulmonary Health
Dr. Leann Silhan talks to PF Warriors about nutrition.
The Health Benefits and Side Effects of Butyrate
This Cleveland Clinic article lists foods sources of butyrate, a beneficial fatty acid for digestive health.
Planning for End-of-Life
Talking, thinking and planning for the end of life can be uncomfortable, yet death is inevitable for all of us. Some planning and discussion will benefit you and your loved ones.
The Conversation Project
Resources to help people share their wishes for care through the end of life.
The Five Wishes
Talk to your loved ones today about what matters the most.
Resources for Serious Illness and End-of-life Care
From the National Hospice & Palliative Care Organization, practical guides and forms for end-of-life planning.
Getting Your Affairs in Order View a talk about legal documents you may need to protect yourself, your estate, and your loved ones.
Life Folio Checklist
Gather important contact details and locations of important papers for your family in case of emergency.
What are Palliative Care and Hospice Care?
When you need more care than your family or loved one can give? Is one of these offerings right for you?
Six Myths about Hospice Care
Is what you think you know about hospice true?
Signs of End-Stage Pulmonary Fibrosis
End-stage pulmonary fibrosis can continue for years and everyone is different. But, we all want to know what to expect. This short article describes common end-stage symptoms.
13 Pulmonary Fibrosis Stage 4 Symptoms and Finding Relief
An Advanced Practical Registered Nurse describes the symptoms that can appear with the severe stage of pulmonary fibrosis.
Wrestling with the End Stage of Pulmonary Fibrosis
WARNING: This article contains information that may be distressing for some. Kim Fredrickson talks about what to expect at the end of life with pulmonary fibrosis. Sadly, Kim passed away from PF in 2019.
Written by members of PF Warriors, this guide is full of practical information. Select a language below to read or down now.
Our Promise
PF Warrior members carefully select the resources we share here, choosing only trustworthy ones with information based on evidence and science. We are not influenced by advertising or sponsorship in selecting these links, but by our experience.
We are patients and caregivers, not healthcare providers. This content is for educational and informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Please ask your physician any questions you have about your medical condition or treatment.
Photo by permission of Keith B.
