What to Bring to the Cardiology Follow-Up When You Were On ECMO
You get a date on the calendar, six weeks out, and you tell yourself you'll remember everything you want to ask. Then the appointment shows up, the cardiologist has maybe fifteen minutes, and you spend the first four of them trying to remember what you meant to ask about, and whether it was actually important or whether you're wasting the doctor's time. Half the list is gone. You drive home and remember the other half in the car.
If you were on ECMO, the notebook of general heart-health advice does not help much here. Cardiac arrest survivors, bypass patients, people managing heart failure: there is a lot written for all of them, and plenty of hospital discharge packets cover the basics. Almost none of it is written for someone who was on extracorporeal membrane oxygenation, sedated for days or weeks, and woke up with a gap in their memory and cannulation sites that took a while to heal. ECMO survivors are a small group. The recovery is its own thing, and most tools were not built with that population in mind, because there aren't enough of you to build a product category around. Heart Restarted was.
Questions, sorted by what you actually need answered
Inside the app, Questions for My Care Team is a place to write down what you want to ask before you're sitting in the exam room trying to remember it. You add questions as they occur to you, whenever they occur to you: at 2 a.m. when you can't sleep, in the car on the way home from physical therapy, whenever something about your body doesn't make sense yet. There is also a set of starter questions to pick from if you are not sure what to ask, including ones about long-term follow-up after ECMO.
Order matters more than it sounds like it should. A fifteen-minute appointment does not have room for eleven questions. It has room for three, maybe four. Put the ones you can't leave without answering at the top of your list, and let the rest wait for the next visit or a phone call. That is the difference between walking out with what you needed and walking out still worried.
Your list stays on your phone
The list is saved on your own device. Heart Restarted does not receive or store it, so what you write about your body and your medicines stays between you and the page you print. The trade-off is that it does not follow you to a new phone, so print it before the visit.
There is also a peer side to the app, under My Buddies, where you can send a connection request to another member and message them directly. If a question feels too small to bring to the doctor, you can bring it to them instead.
Print it before you go
Heart Restarted is free, with no paywall. The questions and the printable sheet live in Questions for My Care Team.
Print your questions before you go. Open Questions for My Care Team, add what you want to ask, and hit Print.
Heart Restarted is not a substitute for medical advice, diagnosis, or treatment. Always talk to your cardiologist or care team about your symptoms, medications, and recovery.