📋 Your Pulmonary Fibrosis / ILD Health Passport
Notes, questions, trackers, and your care team — saved in your browser.
What happened at your last visit?
Questions to bring to your next visit
What you’re tracking
Record what matters week to week — symptoms, meds, sleep, mood, vital signs.
My Care Team
Pulls from your kindness log — open the Encounter Card to add or rate.
🌐 FFH Network Trackers
Placeholder — Lucy’s integration. Tracker URLs wire in here.
Your modifiable risk factors, turned into a plan
Dr. Rob is prototyping a Modifiable Risk Factor Motivator widget on Stroke first. When it ships it embeds right here — turning each Pulmonary Fibrosis / ILD-relevant risk factor into a tracked, evidence-backed action.
If you ever need to explain your Pulmonary Fibrosis / ILD in 30 seconds, start here.
“I have pulmonary fibrosis — scarring in my lungs that makes it harder to breathe. I take antifibrotic medication, sometimes use oxygen, and watch carefully for any infection that could make my breathing worse. I wanted you to know because shortness of breath at rest or a sudden change in my breathing is an emergency — call 911.”
📚Your 16 Course Modules
Click any module to open it. Each opens on the Knowledge Check — that’s your pretest. Taking it unlocks Learn It; reading each tab unlocks the next; finish by retaking the same check to measure your growth.
What Pulmonary Fibrosis Is
Scarring in lung tissue makes it stiff. Less air exchange. Progressive in many.
Why Antifibrotics Matter
Pirfenidone and nintedanib slow scarring. They don't reverse it but they extend lung function.
Spot the Red Flags
Severe SOB at rest · cough up blood · chest pain · bluish lips — 911.
Infection Triggers
Cold, flu, COVID, pneumonia. Any infection can trigger an exacerbation.
Numbers That Matter
FVC, DLCO, 6-minute walk. Trended on schedule.
Antifibrotic Daily
Take with food. GI side effects common but manageable.
Pulse Ox at Home
Drop in O2 with effort is a warning sign. Log it.
Pulmonary Rehab
Supervised exercise + education. Real outcomes data.
Make Every Visit Count
Bring oxygen log, walking distance, any new symptoms.
Your Care Team
Pulmonologist + ILD specialist + sometimes transplant evaluation.
Telehealth
Med management works telehealth. Imaging in person.
Insurance & Cost
Antifibrotics are expensive — manufacturer assistance programs exist.
Transplant Eligibility
Some patients are candidates. Conversation worth having early.
Teach & Mentor
Pulmonary fibrosis is isolating. Patient-to-patient support helps.
Advocate
Research funding for ILD is small. Patient voices push it forward.
Research & Trials
Combination therapies, biomarker studies, lung regeneration.