The transfer would be difficult, especially because Eric couldn’t walk. At about $10,000, hiring an air ambulance was prohibitively expensive. (I was told that this would be an out-of-pocket expense not covered by health insurance.) To fly on a commercial airline, Eric would need to move himself with assistance from a wheelchair to an airplane seat.
How, I wondered, do others in similar circumstances — especially people without my nursing knowledge, familiarity with hospitals and professional contacts and resources — navigate this kind of complexity?
At 1:15 p.m. on May 6, Eric and I flew out of Chicago on a commercial jet. An attendant — an employee of the airport who was not medically trained — met us at the curb at O’Hare with a wheelchair and stayed with us until we boarded the flight. There was no cost for this service; we gave the person a tip.
We made sure to have with us copies of Eric’s health records, which included a hospital discharge summary, the list of medications he was taking and his imaging studies. We reached the acute rehabilitation hospital at 5:30 p.m. No one in Chicago ever contacted us to see if Eric had made it there safely.
Eric continued to improve during the next 12 days. With intensive physical therapy, occupational therapy and a variety of other therapies, he progressed from a wheelchair to walking with a walker, and then to being able to go up and down stairs. Although he continued to have double vision and problems with balance, coordination and a constellation of other symptoms, on May 17, he was ready to go home. Everyone was thrilled. But neither Eric nor I was prepared for what lay ahead.
An ever-growing to-do list
The home phase began when we were handed a 10-page report with Eric’s rehabilitation discharge instructions. It listed the five medical personnel Eric had to see: a physical therapist, a neurologist, a primary-care doctor, a vascular physician and, eventually, a rehab physician.
Because Eric was taking a blood thinner, he was required to have his blood drawn weekly; the first draw would need to be the next day, May 18. But the report didn’t say where to go or with whom to make the appointment. Eric also was given seven prescriptions, along with 29 pages of printed information about them; five pages of instructions dealing with home safety; six pages listing outpatient rehab facilities; and a handwritten list of four community stroke support groups. And his vision was still compromised!
Although the discharge instructions were written in lay terms, there was just too much information to absorb. No one reviewed it with us, nor was there any communication with Eric’s longtime primary-care doctor.