📋 Your Adult Congenital Heart Disease (ACHD) 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 Adult Congenital Heart Disease (ACHD)-relevant risk factor into a tracked, evidence-backed action.
If you ever need to explain your Adult Congenital Heart Disease (ACHD) in 30 seconds, start here.
“I was born with a heart defect. I had surgery or interventions and I’m followed by an adult congenital heart specialist. I wanted you to know because my anatomy isn’t standard — pregnancy, surgery, dental care, and emergencies all need someone who knows my history. If you take me to an ER, please tell them I have adult congenital heart disease and give them my cardiologist’s name.”
📚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 ACHD Is
You were born with a heart defect. Repaired or palliated. Now you need specialty follow-up.
Why Specialty Follow-Up
Your anatomy isn't standard. General cardiologists may miss what's specific to you.
Spot the Red Flags
Fainting · sustained palpitations · stroke signs · severe shortness of breath.
Triggers
Dehydration · altitude · pregnancy · surgery without ACHD planning.
Know Your Anatomy
Diagnosis, prior procedures, residual lesions. Carry a written summary.
Daily Meds
Often beta-blockers · anticoagulants · diuretics. Adherence critical.
Imaging Schedule
Echo, MRI, CT on a personalized schedule. Don't skip.
Activity Limits
Highly individualized — especially for cyanotic, single-ventricle, or pulmonary HTN.
Make Every Visit Count
ACHD visits are precious — bring all questions, including pregnancy and surgery plans.
Your ACHD Team
ACHD specialist + adult cardiologist + sometimes pulmonologist + OB if pregnant.
Telehealth
Useful for med management; structural imaging in-person.
Insurance & Cost
Highly individualized. Pediatric-cardiology-trained adult specialists often centralized.
Pregnancy & Surgery
Both require ACHD planning before, during, after. Don't wing it.
Teach & Mentor
ACHD patients often feel isolated. You can change that for someone.
Advocate
Push for transition programs from peds to adult care. Many fall through gaps.
Research & Trials
Genetic links, novel valve therapies, transplant outcomes.