📋 Your Cystic Fibrosis 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 Cystic Fibrosis-relevant risk factor into a tracked, evidence-backed action.
If you ever need to explain your Cystic Fibrosis in 30 seconds, start here.
“I have cystic fibrosis. My body makes thick mucus that affects my lungs and digestion. I do daily airway clearance, take enzymes with food, and stay on top of infections. I wanted you to know because if my breathing changes fast or I start coughing up blood, that’s an emergency. If I’m short of breath at rest or have severe abdominal pain — 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 CF Is
Genetic condition affecting mucus production. Lungs, pancreas, sweat glands.
CFTR Modulators
Trikafta and related drugs have transformed CF outcomes. Daily use.
Spot the Red Flags
Severe SOB · hemoptysis · severe abdominal pain (DIOS) · 911 territory.
Infection Triggers
Pseudomonas and other CF-specific pathogens. Cross-contamination concerns.
Know Your Numbers
FEV1 trend · sputum cultures · CFRD screening · weight.
Daily Regimen
CFTR modulator · airway clearance · inhaled antibiotics · enzymes · vitamins.
Airway Clearance
Vest, devices, breathing techniques — daily, not optional.
Nutrition + Enzymes
Pancreatic insufficiency means enzymes with every meal. Calories matter.
Make Every Visit Count
CF visits are precious — bring everything: meds, weight, sputum, mood.
Your CF Team
CF center: pulmonary + GI + nutrition + social work + psychology + RT.
Telehealth + Apps
CF care has good telehealth options. Track meds and exercise.
Insurance & Cost
CFTR modulators are very expensive — assistance programs critical.
Pregnancy & CF
Pre-conception planning is real. Discuss early.
Teach & Mentor
CF community is tight-knit. Virtual peer support (in-person has cross-infection rules).
Advocate
CF research advocacy has been historic — keep pushing.
Research & Trials
Next-gen modulators, gene therapy, anti-inflammatories.