Borrowed Time

The body Brooke Sterling works so hard to love was built to kill her

There were issues to confront. Kim, for one, had to deal with anger and frustration toward the doctor in Washington who thought about testing Brooke for cystic fibrosis but did not. Had Brooke's CF been diagnosed earlier, the child would have had to endure far fewer invasive hospital tests and could have begun treatment for her digestive problems earlier.

"I just couldn't believe the pediatrician would have dictated that note in a file and never said to us, 'This is what we're thinking,'" she says. "I made an appointment to see him and told him, we had two more children. If you had diagnosed her, we would not have had these other two children. . . . That's not the issue — we love these boys — but I felt it was a failure on his part."

No matter how normal the Sterlings tried to make life for their kids, it wasn't. There were hospitalizations. There were routine lung function tests to take, strict diets to follow, enzymes and pills to swallow. And worst of all, there were late-night coughing attacks. Walter III shared a room with Jordan as a child and remembers that he would "cough all night long. He would cough up so much mucus and he'd be embarrassed at the amount so he'd force himself to swallow it."

Brooke says her biggest struggle as a child — one that has continued into her adult life — was trying to maintain a healthy body weight. She recalls pink packets of "vile"-tasting digestive enzymes poured onto food or into her drinks, and glasses of orange juice spiked with oil just to add calories.

Still, neither Brooke nor Jordan recalls feeling particularly different or "sick" as children.

"I don't think I consciously thought about CF at all," Brooke says. "Maybe subliminally. It was just kids growing up, very matter-of-fact. You have lunch, you have dinner, you wear pajamas to bed. Every few months you go into the CF clinic and you do this regimen and you do these therapies in between and you call it a day. I think about my health so much more now than I ever did as a kid. I think about it all day long on some level."


Brooke's experience with CF turned out totally different from her brother's. Brooke left home for boarding school in California her junior year of high school and then attended Pitzer College in southern California, where she studied social work and lived her life at "mach seven," as she puts it — traveling to 13 different countries, working full-time as a social worker, getting a master's degree from Columbia University in New York City, becoming executive director in charge of fund raising and staff at The Wellness Community, a nonprofit cancer support organization in the Valley. She says she paid very little attention to her cystic fibrosis in her younger years.

"Honestly, I would have to say that CF did not catch up with me until my very late 20s. That's when I started noticing my margin had significantly closed in."

Jordan's margin closed much sooner.

In high school at Brophy Prep, Jordan's body was beginning to turn against him. He did manage to move away from home for college, but by the time he graduated from Santa Clara University in 1997, it was pretty clear Jordan was nearing death. While in school, he joined a fraternity, and admits he wanted to do everything his friends did, regardless of CF.

"I didn't want to let the disease get the best of me," he says. "I still wanted to have fun, and when you're 18, 19 years old, you do whatever the hell you want. You don't always listen to what people have to say about what's best for you."

By graduation, his lung functioning was at about 30 percent — imagine running a marathon with a gigantic metal clamp around your lungs and you get some idea of what it was like for Jordan to breathe through the mucus filling his damaged lungs. And he was only getting sicker.

Jordan was living within 40 miles of Stanford University, home to one of the premier pulmonary clinics in the country, and his medical team thought it was time for Jordan to consider a lung transplant.

Ramona Doyle, a doctor and medical professor at Stanford who worked with Jordan, would not speak specifically about Jordan's case, citing doctor-patient confidentiality, but says most patients who elect to go the transplant route know that realistically they have a life expectancy of less than two or three years without it. And after the procedure, there is an enormous risk of infection and rejection of the organs.

"The context in which we're having this conversation is that they're dying," she says of the patient.

Knowing he had no other option, Jordan decided to go for it.

"This was a very difficult decision, being 22 years old, where most of my friends were thinking about careers and traveling and girls and partying," he says. "It definitely made me grow up real fast."

He spent the next three years of his life in limbo, getting sicker, waiting for the pager the transplant center gave him to go off, signaling it had found him a donor.

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5 comments
Dino D
Dino D

RIP Jordan, I didn't know you well, but I knew you. May angels lift you safely to the heavens.

Dino D
Dino D

RIP Jordan. I didn't know you well, but I knew you. May angels lift you safely to the heavens.

Harry Thompson
Harry Thompson

Do you have an email address for Terry Greene Sterling?

 
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