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Two months after a double lung transplant, Lodi's Alicia Brogle is breathing on her own and eager to take on life

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Posted: Friday, September 11, 2009 10:00 pm

Alicia Brogle stares out the window of her single bedroom apartment, laughing at the black squirrel she's named Mirkwood, "Mirk" for short.

"They go nuts over banana chips and almonds," she says, pointing at the four-legged pseudo-pet creeping across her balcony on the one bedrooom apartment across the street from Stanford Medical Center.

Her laugh is high pitched and erupts from her chest in a way it couldn't two months ago.

At 9:30 a.m. on July 8, the 32-year-old Lodi woman born with cystic fibrosis woke to her sister and friend's abrupt, excited screams. They had answered the most important phone call of Alicia Brogle's life. Stanford Medical Center was in possession of two small lungs, and her name was next on the recipient list.

Alicia Brogle, who had been on Stanford's transplant list for two months, is the only person in her family with cystic fibrosis, the genetic disease that made her lungs slowly decay and suffocate her. The last two years she was tethered to oxygen tanks that kept her from leaving the house when she could find the energy to.

Within 20 minutes of the call, Alicia Brogle, her sister, Sheila Brogle, and Alicia's friend, Angelique Grijalva, loaded their packed suitcases into the trunk of her sister's Honda wagon with 12 heavy tanks of oxygen and rushed to Palo Alto, where Alicia Brogle hoped her life would change forever.

The donor, she found out, was from Southern California. He was young, between 13 and 16, she was told. But no one could tell her exactly how he died.

"It sounded like he was on life support," said Brogle, who wants to meet the donor's family.

It wasn't until the next morning that she went in for surgery. They ran tests to make sure the lungs were exact fits. Then, there was more waiting. Another patient, not unlike her, had also received a call saying a heart was available, from the same boy. They'd have to do the heart transplant first.

Alicia Brogle couldn't wait for the surgery. Her parents, Kurt and Rita Brogle, knew there was a possibility she wouldn't make it out. Her sister was nervous. When it was time to go, Alicia Brogle was wheeled into the operating room with her thin pale arms and fists already raised in victory.

She went in without looking back.

"I was really excited. I wasn't thinking about anything negative," she said.

Asleep on an operating table surrounded by masked doctors and machines that made the room look like a set of a space movie, a seven-and-a-half inch incision was made from the top of her sternum to just above her stomach. Cracking ribs - though she's not exactly sure how many they actually had to break - surgeons spread her chest open and found the disease staring them in the face: two swollen, sick lungs, dark with scar tissue and over 30 years of CF progression.

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The left lung came out easily. The right lung, however, had adhered to the muscle wall and made the surgeons fight to get it out.

With a bypass machine pumping blood out of her body during surgery and then sending it back in, Brogle had several strokes. Nobody knew how they would affect her recovery.

Nine hours after she was cut open, two young, healthy lungs were closed inside her chest.

Family and friends who had taken over a hospital waiting room were relieved to hear she made it through the surgery, but her condition was still unstable. They didn't know when she would wake, or if her body would reject the lungs.

In the months leading up to her surgery, Alicia dreamt of what it would feel like to breathe deeply and pain-free. Before her surgery, she could only use 18 percent of her lung capacity. The average person uses 95 to 100 percent. Her breaths were short, sharp and painful. She'd heard other patients talk about first breaths after surgery, saying things like "you feel like you're breathing for miles and miles," Alicia Brogle said.

After surgery, every one waited for Brogle to wake up and take those breaths. One day passed, and she still remained asleep, still breathing with oxygen tanks. Then two days. And three. Alicia was in a comatose state for five days after her surgery.

"I didn't know if she was ever going to come out of it," said Alicia Brogle's mother, Rita.

When she awoke - groggy and barely there -breathing was difficult, and she continued to breathe with oxygen tanks.

"I made myself wake up," Alicia Brogle said. "I was struggling and fighting."

Her motivation: She didn't want a feeding tube, which they would have given her had she not waken up. By that time, the already petite woman was down to 95 pounds.

Her eyesight was skewed from the strokes, and she used an eye patch to keep from seeing double.

She couldn't remember how to eat, and had to re-learn how to use a fork with her right hand.

Hallucinations were part of the process, including the cat she imagined rubbing its head on her blanket.

Breathing was tough, and she didn't experience the miles of fresh air she'd heard about.

"I thought it was going to be, like, super easy," Alicia Brogle said.

She was tired. Her body was sore. A part of her still felt foreign.

Brogle stayed in Stanford's intensive care unit for three weeks, longer than many transplant recipients.

Out of ICU

On Aug. 1, Brogle gained a little bit of freedom. She moved into her own apartment across the street from the hospital.

The first thing she did was take a real bath, which lasted more than two hours.

"It was amazing," she said.

With an eye for fashion and color, she and her sisters and friends quickly decorated the apartment with paintings, Moroccan pillows and whimsical art.

The living room is where the girls spend most of their time, watching "Doctor Dolittle," "Wizard of Oz" and "Arsenic and Old Lace" on VHS. The room is bright, with a window that allows sunlight to flood upon Brogle as she lays on the couch. She sits there often, watching the two squirrels they've adopted. Mirk, named after "Harry Potter's" Mirkwood, looks freakishly like a bat with all-black skin and fur. The other is Carmen Miranda, a pregnant waddling squirrel, named after the fruit-hat wearing samba singer of the early 1900s.

Since her surgery, Brogle's been focusing on eating healthy, which also helps the diabetes that came with cystic fibrosis. On a mainly vegetarian diet, the girls are learning new recipes that call for figs, avocados, herbs and goat cheese.

When they grow antsy from sitting inside, Alicia Brogle will accompany her caretaker-of-the-week to Target or the grocery store. Every time she leaves, she wears a mask to make sure she doesn't breathe in germs that could attack her lungs.

It's been more than two months since Alicia Brogle had the surgery, and she is beginning to be able to do things like sit up on her own. She is completely off of oxygen and breathing on her own. Her caretakers - mainly her sister Sheila, but her mother, as well as Grijalva - take turns living in the apartment, cooking and running errands.

"It's a lot of work … if she drops something, she can't really bend down and get it," said Rita Brogle, who spent the week with Brogle. "It's a full round robin."

Earlier this month, Brogle started exercising at a rehabilitation gym in Redwood City, where she works her legs on a stationary bike. She still can't lift her hands over her head or move her arms in a circular position. At home, she lifts one or two pound weights.

A changed woman

While she's the same woman who dreams of designing purses and writing a book about all she's gone through, there are small things that have changed. She's noticed her eyebrows turned a lighter shade of brown. Her nails, once thick and rounded, are growing straight. "It's so awesome - I love them," she says, rubbing her fingertips over bright red painted nails. And her shape is changing too. Her ribs, have moved, tapering her thin frame even more. Even the octave of her voice has changed, giving her a deeper tone.

Because of the medications, her face is fuller, and when she laughs, her cheeks are round.

"When I first saw her, I was very shocked," Rita Brogle said.

Grijalva notices a big change, too.

"She's kind of like back to herself at this point," she said, referring to the days when the two did theater together, when the disease didn't control Alicia Brogle's entire life.

Brogle, too, feels good, and she's determined to recover completely.

"I feel like a totally new person. It's awesome," she said.

Brogle is past the scariest part, but now, she has to make sure her body doesn't reject the new lungs. On at least 50 pills a day, Brogle is determined to stay healthy. Before visitors come, she makes sure they're not sick, and when they get there, she asks again, "Have you been sick?" "Have you been partying?" and "Will you please take your shoes off?"

She now visits the doctor two or three times a week, instead of every day. So far, everything is going well. Doctors were keeping an eye on the gap between the new, smaller lungs and her stomach, where they were worried there might be fluid.

However, doctors tell her it's not a big problem, and she's confident she'll be able to get back to Lodi earlier than expected.

"They said three months tops, but I think I'll go home at 2-and-a-half-months," Brogle said.

She is excited to get back to her home, where she lives with her Pomeranian Shuggie and Sheila Brogle, who will care for Alicia. Brogle has lots of plans. She wants to learn to play flute, a hobby that ended with cough attacks as a child. She wants to start a company where she'll fuse her fashion design background and artistic side. She wants to write about cystic fibrosis and sell her creative shirts to raise money for others like her. She wants to go with her sister to Belize's end of the world party in 2012. She wants to go someplace tropic and swim with dolphins, to do the things that were unthinkable even a year ago.

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