Teen pushes health issues aside to star in school musical

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Updated: July 26, 2011 12:22AM

Julie D’Agostino had to do a lot before she could play the lead in her high school’s spring musical.

There were all those lines to memorize, songs to practice and dance steps to master. But before she could do all that, the high school senior had to take her name off the lung transplant list at Loyola University Medical Center.

Julie may be an excellent singer and a natural on the stage, but she also suffers from cystic fibrosis, a chronic, inherited disease that impacts the lungs and digestive system. Julie, 18, and her brother, Kevin, 24, both have CF, and each has a twin who does not. With Kevin, the illness hasn’t manifested itself in the same serious manner as it has his youngest sister. The disease has damaged her lungs terribly.

But while Julie’s lungs may be growing weaker, her spirit is strong. There was no way she was going to let her condition get in the way of playing the starring role of Tracy Turnblad in Immaculate Conception High School’s production of “Hairspray.” The role would be especially fun because the role of Tracy’s best friend, Penny Pingleton, would be played by her twin, Natalie.

While like most siblings the twins may have their trying moments, they actually are quite close. A quick look here, a tilt of the head there, and a lot of unspoken communication goes on between them. Natalie’s playfully funny, and that sense of humor has helped the twins through many a rough patch in Julie’s illness.

Impact of CF

The desire and the ability to do the Tracy role are two different things, and that was the gamble Julie, her family and the school were taking with her in the lead. The body of a person with CF produces a sticky mucus that clogs the lungs, brings on infections and saps energy. And triggers coughing — tremendous coughing for such a petite young woman. Imagine the sound of the worst winter cough; Julie’s is 20 times worse. It’s deep and rough and sounds like it takes up every inch of her lungs and then some. Sometimes the coughing can go on for quite a long time. Listening to it, you ache for her parents, Mary and Mario, who have witnessed how it takes so much out of their daughter.

Julie, though, seems to take it in stride. All she knows is a life where the coughing has had a prominent role. When the coughing begins, she is likely to discreetly turn her head into the crook of her arm until she can remove herself from others. As she explains it, when she coughs she wishes people around her would just ignore it.

A ‘partner’ at audition

Actually, on the day she tried out for the play, it would have been hard to ignore her illness. Her portable oxygen tank was right beside her (after that the tank stayed home). That day, Julie matter-of-factly explains, “My breathing wasn’t the best.”

She “kinda” wanted the part. It wasn’t her illness that worried her, but rather that she thinks she is more of a singer than a dancer and this is a role that requires a lot of both. Still, she’s all smiles, and her face lights up when she talks about landing the lead in the play. She has performed in productions during grammar school and, since her freshman year, “all the plays” at ICHS, which is in west suburban Elmhurst.

Before giving Julie the role, director Mark Dedowicz checked with Julie’s mom. Would Julie be able to do it? Knowing how much Julie loves to perform, Mary gave the green light because, well, “she’s an actress.”

Agreeing to the role meant Julie would have to be taken temporarily off the transplant list to make sure she’d be available for the play. She’s been on the list the better part of two years, and occasionally when the family has gone out of town they’ve pulled her off.

It’s always a temporary move; if you take yourself off totally you can never get back on, according to Mary. After the play, the doctor has advised that Julie must get back on and stay on.

Transplant means hope

While the family speaks candidly about the lung transplant awaiting Julie, it still seems to be the elephant in the room. Right now they know what they need to do to get Julie well. The transplant will be a whole new scene. It’s a tough procedure during and long afterward. The success rate is 50 percent, Mary says. Because of the seriousness of the procedure, the entire family was brought in to have everything explained. No one sugarcoats anything, either.

“It’s difficult to hear,” says Mary.

The surgery itself likely will take at least eight hours. CF makes a person’s lungs more fibrous, which makes them more difficult to remove, according to Mary.

Still, they all are grateful that the transplant is an option. About 30 lung transplantations are done at Loyola each year, according to the medical center’s website. “The knowledge that there’s hope” is really a comfort, Mary says. “We’re so thankful there is that [transplant] for her.”

Unlike kidneys or livers, where tissue typing is used to make sure the organ is a good match, with lungs they go on size and blood type, according to Mary. Julie is just 4-foot-9, so it was assumed she’d be given the lungs of a child. When she turned 18 in November, her name moved to the adult list, which, the family worries could complicate Julie receiving a child’s lungs.

So saying yes to the role was the easy part. Keeping her healthy through the weeks of rehearsal and four performances wouldn’t be so simple. There’s a reason Julie is on the transplant list, even though she is quite young. She was accepted because her lung function is so low.

The amount of time they’re usually able to keep Julie well has gotten shorter. In what Mary calls “the old days,” they used to be able to keep her healthy for three months before the extra meds and periodic hospitalizations would have to start again. Now it’s more like six weeks, eight if they’re lucky.

A lot of the medications that once made Julie better don’t work anymore. Yet, as Mary explains it, their pulmonologist at Lutheran General, Dr. Gabriel Aljadeff, who they’ve been seeing the last couple years, “has changed our lives.”

“Her lungs are shot and yet he continues to get her well,” Mary says. “He is like family to us.”

Determined to be well

It’s two weeks before opening night, and Julie’s not feeling so hot. The cough is there and persistent. Mom Mary is a school nurse, but both she and husband Mario know all too well the drill to keep Julie healthy. They’re doing what Julie calls “hospital at home.” This requires several IVs of antibiotics, twice daily nebulizer treatments and chest therapy. With that, Julie puts on a bright pink vest that looks like one you’d wear skiing. That is, until the tubes are attached. The vest fills with air over her chest and then it starts vibrating to move the mucus off the walls of her lungs. When Julie speaks while the vest is operating, her voice vibrates too.

They’re staying in touch with Aljadeff and reassure him that if Julie doesn’t get better in the next couple days, they’ll hospitalize her for what the family calls “a tune-up.”

Again, because this is the way her life always has been, Julie simply explains that “occasionally I am hospitalized.”

While Mary and Julie are trying to remain positive, Mario, who does community theater himself, laments that they don’t have understudies for school plays. When Julie starts coughing yet again, he gently strokes her shoulders and the top of her back. As he does this, you know that if this man could pull that illness out of his baby girl, he would.

Yet a smiling Julie is confident she will get through this and everything will be fine. While everyone else keeps saying opening night is just two weeks away, she points out no, it actually is 16 days away. Not 14 days, but 16 days — big difference! And anyway, she explains, “I always bounce back.”

“We’ll get there, get her to 98 percent,” says Mary.

It’s showtime!

And in what seems like a miracle, Julie does indeed get better and doesn’t require a stint in the hospital. Later Julie will say it was no accident. She was “religious” about doing her treatments in the weeks before the play. She rested a lot to avoid getting fatigued. When outdoors she wore a winter coat, hat and scarf, even though friends teased her. (Let’s face it, teens are notorious for underdressing in winter.) And she made sure to get the proper nutrition. The coughing expends so many calories, sometimes Julie can get quite thin; because of that she also has a feeding tube to draw extra supplements.

Now, after reading all this, it would be easy to come away with the idea that a frail and coughing Julie would take the stage on opening night. Quite the contrary. She opens her mouth to sing that first number and this incredibly strong voice emerges. She’s a little dynamo onstage, brimming with charisma and energy, giving the Tracy Turnblad character just the right amount of camp (the play is based on the John Waters film, after all).

And there is no coughing. None. Julie explains afterward that sometimes she can hold it in, and if she felt like coughing, she’d do it while offstage (even though her character is in almost every scene). But really, “I didn’t feel like I had to cough,” she says. Her castmates always made sure there was a water bottle waiting for her when offstage, which helped a lot, Julie says.

The day before opening night, the cast put on the play for grammar school students from nearby schools. At intermission, Julie was so tired she told Mary she didn’t know if she could continue. “You can do this,” Mary assured her. And Julie did just that.

To restore her energy and voice after opening night, Julie used the oxygen tank. She also rested and didn’t speak from the time she returned home after opening night until the performance the next night. She got through all the performances just fine.

A mob of people surrounded Julie on opening night to congratulate her. Friends and neighbors called and sent flowers to the two sisters praising their performances (both Julie and Natalie were well-suited for their roles). Every time the doorbell rang with more flowers, Julie and family were so appreciative of everyone’s kindness.

Two days after she portrayed Tracy Turnblad for the last time, Julie’s name returned to the transplant list.