How to Show Up Early for Your Procedure

For many medically complex patients, surgery does not begin in the operating room. It begins weeks before, in preparation, communication, trust-building, and coordination.

Recently, I underwent septoplasty surgery while living with Andersen–Tawil syndrome, Long QT syndrome, and hypokalemic periodic paralysis. Like many rare disease patients, anesthesia and surgical planning are never simple considerations for me. They require intentional collaboration between specialties, careful review of medications and electrolyte management, and a team willing to listen.

What stood out most throughout this experience was how much smoother the process became because everyone showed up prepared.

My pre-operative clinic appointment did not feel rushed or dismissive. Instead, it felt collaborative. The providers reviewed my chart thoroughly, acknowledged the complexity of my condition, and discussed anesthesia considerations openly. Most importantly, they listened. They recognized that rare disease patients often arrive carrying years of lived experience inside our own bodies.

By the time surgery day arrived, we had done everything possible to “get our ducks in a row.”
Medications were coordinated. Caregivers were informed. Transportation and recovery plans were arranged. My medical protocols were available. My specialists were looped in. We showed up mentally early, not just physically early.

That preparation mattered.

The anesthesia process itself went remarkably smoothly, and that is something I do not take lightly as someone with a medically complicated history. Every member of the care team approached the day with professionalism, calmness, and preparedness. Instead of feeling like I was walking into chaos, I felt supported by a system working together.

As social health leaders, patient advocates, caregivers, and voices within the chronic illness and rare disease communities, we often talk about what goes wrong in healthcare because those conversations are necessary. But it is equally important to share the moments where collaborative medicine works well. Those stories matter too. They help patients prepare, encourage providers, and remind medically complex communities that safer experiences are possible when communication and planning are prioritized.

This experience reinforced something I have learned repeatedly throughout my healthcare journey:

Preparation is not fear.
Preparation is empowerment.

And for medically complex patients, advocacy often begins long before the first incision