A Heart Patient’s Quest for Full Access to His Medical Data

By Eve Harris

X-ray of Hugo Campos' ICD. (Courtesy: Hugo Campos)

X-ray of Hugo Campos' ICD. (Courtesy: Hugo Campos)

Hugo Campos was apologetic about postponing a scheduled interview with me two weeks ago. In a midday email he wrote, “Just had the biggest arrhythmia ever. I’m trying to recover from the scare. I might go into the ER. I’ll keep you posted.”

Arrhythmia is when a heart unpredictably beats in an irregular rhythm. For Campos it’s a symptom of an inherited heart condition. If the arrhythmia goes untreated his heart could stop beating, putting him at risk of sudden cardiac arrest.

For many patients, the best treatment for arrhythmia includes an implantable cardioverter defibrillator or ICD. The ICD monitors the heartbeat and can jolt the heart back into a normal rhythm if necessary. Campos got his ICD in 2007 and his device is part pacemaker, part gentler pulses of electricity. The response of the device depends on the type of arrhythmia he experiences. In either case, the day of our cancelled interview, the ICD may well have saved his life.

“You go from feeling fine to thinking you’re going to die.”

The arrhythmia episodes, or “events,” are sporadic and frustratingly unpredictable. When this event came the 46-year-old Oakland resident was working in his home office. The first thing he did — before he called 9-1-1 was tweet his followers. Then he kept tweeting. Dave deBronkart Storified Campos’ dramatic and frustrating E.R visit.

“You go from feeling fine to thinking you’re going to die,” Campos said after the crisis passed. “It’s emotionally exhausting and traumatic.” Continue reading