From ICU to U of I – student rebounds with palliative care support

Sage Boyd is 19 and set to one day graduate from Carle's Palliative Care program.In a very short time, Sage Boyd shifted from normal college freshman to far-from-normal champion of palliative care, an area of healthcare not everyone understands.

The experience left the Chicago 19-year-old with a Guillain-Barré diagnosis and chronic pain in his back and arms. It also made him thankful.

“I see now that I took my health for granted,” said the University of Illinois student who one day plans to work on Wall Street. “I’d been feeling crummy, but the symptoms escalated. Then I couldn’t feel my legs. When I lost the ability to use my hands, I started to realize how serious things might be.”

Most people don’t “graduate” from palliative care. Palliative care typically lasts months or years while people with chronic but not curable conditions work closely with their care team to live how they want to live for the remainder of their life.

“We expect Mr. Boyd to return to a level that is close to his baseline prior to his illness,” said Dr. Aref, MD, PhD, FACP, FHM, explaining how Boyd will one day leave the growing program.

Just in time for National Palliative Care Month, Dr. Aref and his team moved to a larger space to accommodate even more patients in need of the medical, emotional and sometimes spiritual help palliative care employs.

Before arriving at Carle Foundation Hospital, Boyd was told he might have pneumonia.

He struggled for weeks with coughing, fever, nausea and fatigue. Cough syrup and antibiotics didn’t help.

Sage BoydGoing into respiratory failure led to Boyd being intubated so a ventilator could do most of his breathing for him. As he began to improve slowly but was still unable to talk, he gestured for his smartphone.

“As soon as I gained the ability to hold my phone, I was researching treatments and different forms of the disease,” Boyd said.

He spent six weeks in Carle’s Intensive Care Unit, followed by six weeks of inpatient rehabilitation.

It was hard.

“Rehab started with sitting up in bed for a few minutes per day,” Boyd said. “I was hardly capable of even that. When I was able to sit in the recliner in my room, it was a big milestone, especially for my family, the doctors, the PTs (physical therapists), the OTs (occupational therapists).”

Boyd credits the strides he made to his palliative care team and his desire to get back to normal.

“School is really important to me, so I’ve been really ambitious,” he said. “I’m grateful to be way ahead of where I should be. It helps so much to have a personal relationship with Dr. Aref. I know he cares a lot.

“I’m so grateful for his interest in my well-being.”

The respect goes both ways.

“Two things really strike me about Mr. Boyd,” Dr. Aref said. “The suddenness of his illness trajectory. One day he was a healthy college student, and the next he was a critically ill patient. This had dramatic effects on his psyche and identity.

“Plus, his desire to return to school. … He doesn’t comprehend the mental toughness and tenacity he demonstrates with his drive.”

Sage BoydThat toughness comes in handy as Boyd, Dr. Aref and the team try different treatments to manage the sharp and always-present pain Boyd feels even more acutely when he’s trying to concentrate in class or do homework.

“I’m grateful for all the teams that helped me at Carle, especially the palliative care team. They’ve always been really optimistic about me getting better and just being a student again,” he said.

Palliative care isn’t about death and dying.

Rather it is the area of healthcare focused on helping people live with chronic, progressive and life-limiting illness regardless of the ability to cure the disease. In Boyd’s case, palliative care has served as the scaffolding while his body recovers with the help of a multi-specialty healthcare team.