There’s No Stopping Him

Derrick Taylor is the first patient on a home ventilator the Enloe Health Pulmonary Rehabilitation program has accepted.

He’s “a medical train wreck, medically challenged and genetically rare.”

That’s the way Derrick Taylor, 51, says his medical records describe him — though he doesn’t let the description define him. He is highly functioning despite being dependent on a ventilator. He needs it almost constantly to stay alive. At the same time, Taylor has an undefined neuromuscular disorder that has baffled experts and left him mostly reliant on a walking aid.

He’s also the first patient on a home ventilator the Enloe Health Pulmonary Rehabilitation program has accepted. Scott Fedrizzi, an Enloe Respiratory Care Practitioner, was skeptical Taylor would be a good fit for the program.

“I thought, ‘How will we accommodate this patient?’” Fedrizzi said. “He stood out — he’s supposed to be on a ventilator 24/7. We’ve never had a patient like that.”

Taylor has used a ventilator since 2012. He can be off it if he’s idle. But if he’s active, his carbon dioxide levels become dangerously high without the ventilator. Fedrizzi decided to take a chance. He’s glad he did. Taylor graduated from the Pulmonary Rehabilitation program on Dec. 23, proving his mysterious condition won’t keep him homebound. The program includes education, counseling, and exercise on treadmills and stationary bicycles. The goal is to boost each participant’s lung capacity while learning ways to cope with chronic conditions.

Program Transforms Patient

The program involves 16 sessions over two months. Fedrizzi witnessed a transformation. “Derrick had a lot of anxiety coming in,” Fedrizzi said. Taylor began the program barely able to exercise for 10 minutes. Within three months, he was exercising 30 to 40 minutes and could easily hold a conversation while doing it.

“This is inspiring for people out there suffering from different pulmonary conditions — to see a guy like him doing what he’s doing,” Fedrizzi said. “This is like a medical mystery, but the reality is, if he can do it, maybe others can do it.”

Taylor — who worked as a housekeeper at Chico Community Rehabilitation Center and at Enloe Health for four years, starting in 1996 — acknowledges the mystery but is confident he’ll get an answer soon. He was born with cerebral palsy, and neuroscientists thought he had several other conditions, which were all ruled out. He was tested for Friedreich’s ataxia — an unusual neurodegenerative disorder — but that came back negative.

He does have narcolepsy, which can lead to excessive, unpredictable daytime sleepiness, and cataplexy, a sudden and temporary loss of muscle tone and strength while awake. Taylor said genetic testing shows the presence of hemochromatosis, causing an accumulation of excessive iron in the blood, SORD deficiency, a rare neuropathy that causes muscle weakness and motor dysfunction, and an extra chromosome 5, which carries its own set of genetic consequences.

“I have a whole list,” he said with a chuckle. “That’s what makes me medically challenged and genetically rare.”

Nothing slows him down. Taylor has a cheerful outlook, grateful for being able to get out of his house regularly and serve others. He volunteers distributing food to the less fortunate. He is remarkable because of activity like this, Fedrizzi said.

“He’s inspiring for people out there who are suffering from different pulmonary conditions,” Fedrizzi said. “It shows what Enloe can do for all types of individuals. This guy is living his life while people like him are homebound — they can’t make it to the mailbox without it being an ordeal.”

Taylor exudes optimism and positivity. “Don’t be discouraged. You can do it,” he said. “It’s your choice on how you make it. Don’t let your breathing issues slow you down.”

To learn more about Enloe Health Pulmonary Rehabilitation, visit www.enloe.org/pulmonary.