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Waiting for a new breath of life

Seventeen-year-old Brittany Morgan has one hope of surviving cystic fibrosis - a double lung transplant.

By MICHELE MILLER
Published August 29, 2005

PORT RICHEY - They needed the phone to ring.

They needed the voice on the other end to say a set of lungs was available, lungs that would save the life of 17-year-old Brittany Morgan. But even as they waited, Brittany, a great kid afflicted by cystic fibrosis, got worse.

Last Monday, she was in intensive care at All Children's Hospital in St. Petersburg. By Wednesday she was quite agitated and "out of it," according to her mother. Doctors scrambled to get her to Shand's Hospital in Gainesville, where perhaps they could keep her alive until a donor came through.

Doctors wanted to send her by jet. But that could cause problems with the ventilator that was breathing for Brittany. If not a jet, then a helicopter. But there wouldn't be room for her mom to go with her. Finally, the decision was made to send Brittany in an ambulance - full code, with lights flashing, sirens blaring - all the way to Gainesville.

Then, just before they were to leave, someone asked Brittany's mom to take the phone.

"We might," said the caller, "have a possible donor."

* * *

Of course, they'd heard that before. On June 11 at 7 a.m.

Because it was so early and she didn't recognize the number, Kathy Sebzda left it for the answering machine.

"I had no clue who it could be," said Sebzda. "Then I heard this woman's voice saying, "This is Shand's Hospital. We're looking for the parents of Brittany Morgan.'

"I grabbed the phone and told her, "This is Brittany's mother.' "She told me, "We have lungs.' "

For Brittany, that news would mean that she would finally be able to do something most folks take for granted every day: breathe. It would also bring her closer to realizing her dreams of living an almost normal life - one without wheelchairs and oxygen tanks.

"I want to run around and cheer," Brittany said of her plans for life after transplant. "I want to be a surgeon. I want a Lamborghini that I won't ever trade in - even when I have kids. I want a 10-bedroom mansion and a back yard filled with animals. I probably won't get the big mansion, but my mom will come live with me."

But after making the three-hour drive to Gainesville and going through the entire lengthy preoperative routine, Brittany learned that the lungs were damaged. Her transplant was off.

The family had gone through what those in the transplant business call a "dry run."

"At first we were really mad," said Sebzda, who had to pack up Brittany, her husband, Chuck, and her two other children, Beth, 19, and David, 14, and head home to Port Richey. "But we may have to do this three, four, five times before it actually happens."

Brittany took the news in stride, concentrating on the matter at hand - her empty stomach. "I said, "Okay, so let's go eat'," she said.

* * *

It's been a long haul for Brittany who at 18 months learned she cystic fibrosis, a genetic disease that causes the body to produce a thick mucous that clogs the lungs and leads to frequent lung infections. The median life span for CF patients is about 30 years.

"To us, life isn't normal," said her mother, who twice a day administers Brittany's physical therapy, drumming her hands on her daughter's back and chest to loosen the mucous. "The cabinets are filled with medical supplies. We have oxygen, a feeding pump, infusion pump and handicapped parking. You name it."

Brittany knows a lot about her disease. Still she is determined to live around it, desiring most of all to be "a regular kid.".

"No matter how this turns out," Brittany said "I have to live."

To those who know her well, Brittany is wise beyond her years, often setting an example for others to follow.

"She's a sweetheart - very friendly," said family friend, Kathleen Shaughnessy. "I don't think she's a stranger to anyone. I wish I could be more like her."

"She's just an amazing young lady," said Cathy Foote, Brittany's homebound teacher from Ridgewood High School. "If it weren't for the oxygen you would not know that she was a really sick kid."

At 5 feet tall and weighing 90 pounds when she's feeling healthy, Brittany is a bundle of energy. Despite her illness, she smiles often and talks a mile a minute, her words punctuated with the gestures of her long slender hands and occasional coughing fits.

"Coughing is good," she says. "All my life they've been telling me coughing is good."

She loves animals, especially her three cats and two Rottweilers. "I like arts and crafts and putting things together," she says as she rattles off her laundry list of likes and dislikes.

"I love to go to school - not so much the work but the interaction with other students. But I don't get to go often."

She used to like the Back Street Boys - even went to a couple of concerts courtesy of the Make A Wish Foundation. But she's outgrown them. Now she's into rap. She enjoys comedies, cooking and watching the food channel and infomercials into the wee hours of the morning when everyone else in the house is fast asleep. "If I had a credit card," she says with a giggle, "I'd be broke."

She likes to shop for others, especially her mom, but she doesn't like to shop for herself much because nothing fits her unless it's a double 0 or extra small. She hates when people gawk at her, especially when she has to use the motorized scooter at Wal-Mart or when her mom parks her big silver truck in the handicapped parking spaces.

Most of all she loathes being put on a ventilator and the feeling of being put to sleep before surgery: "That tingling going up your body, like you're alive but there's nothing you can do."

* * *

Brittany's health has steadily deteriorated. In 2002, she underwent an operation to have part of her right lung removed.

"We thought that was going to be the answer," said her mother.

But it wasn't.

Instead there were more frequent hospitalizations and the need for "big gun" antibiotics. The disease has led to other CF-related problems: cirrhosis of the liver, asthma and osteoporosis.

In recent months, Brittany's need for oxygen grew. She couldn't go anywhere without her HELiOS personal oxygen system, carried in a satchel that she slings over her shoulder.

At home, she would get around while connected to a large oxygen machine by 600 feet of clear plastic tubing. She has a voracious appetite. "I eat like a man," she says. Still, she has a feeding tube because the "food just doesn't stick" - and typical of CF patients, her body doesn't absorb calories well.

In January, Brittany caught the flu and never completely recovered.

On June 7, she was put at the top of the double lung transplant list.

Since then, Brittany has helped tend to the business of raising money - about $55,000 - to offset the expected transplant-related expenses that won't be covered by health insurance.

So far, the community has donated about $5,000 for Brittany's care, through local fundraisers and the Children's Organ Transplant Association.

She wants to put a real human face on the donation can, so with her teacher, Cathy Foote, Brittany was handing out flyers for the local fundraisers being held on her behalf; one hosted on Aug. 18 by CiCi's Pizza in New Port Richey and another held Aug. 20 at Abssalute Body Art. That fundraiser involved some 25 local businesses and had folks like John Stoycon lining up to get tattoos for the cause. "I was thinking about a tattoo for awhile, but after I heard about this (Brittany's fundraiser) it pushed me over the edge," said Stoycon as tattoo artist Floyd Dicus colored in a black panther on his right calf.

It's all part of planning for Brittany's second chapter, said her mother, "her new life after transplant."

"Yeah," said Brittany, with a smile. "Life's going to be good after transplant."

But last week, whether Brittany would live long enough to get a transplant became a real question. At All Children's, said her mother, her lungs were so brittle, "That they don't even want her to talk."

It was another one of those scary times that, as her mother says, "have you worrying that she's not going to make it through."

* * *

It was as if the road cleared before them, said Sebzda. "I couldn't believe it. There was no traffic. It was empty all the way to Gainesville."

At 1:30 a.m. Thursday morning Sebzda was informed that the lungs were from someone much larger than Brittany, so doctors would have to cut them down.

"But they told us it was a go," Sebzda said.

At 2:10 a.m. Thursday morning Brittany was wheeled into what would be about an eight-hour surgery.

"She was really so out of it that I don't even think she was comprehending what was going on," said a weary Sebzda. "It was definitely time."

Sebzda said she felt nauseous the first time she went in to see her daughter after the surgery. "It's really hard seeing her hooked up to all that equipment," she said. "We're not used to seeing all that."

Later a nurse on the transplant team would come to visit. "She told me "This was meant to be. This is definitely from God'," said Sebzda. "She told me if they didn't take that donor they were afraid they wouldn't get another one."

By Friday morning, Brittany was "looking really good," said her mother, adding that the doctors were very pleased with her progress. "She was a very sick little girl. She's not out of the woods yet, but she's making progress. Her spirits are up. Her color is good. She's very coherent. She's writing notes when she wants something like ice chips or pain medicine."

Best of all, Brittany's requirement for oxygen and the ventilator was decreasing. "That's a good sign. She's starting to breath on her own," said Sebzda, who will spend at least eight weeks with her daughter in Gainesville learning how to care for her now that she's post-transplant.

"I'm excited for her because I know she's going to feel so much better," she said.

"It's just the beginning."

--Michele Miller can be reached in west Pasco at 869-6251., or toll free at 800 333-7505., ext 6251. Her e-mail address is miller@sptimes.com

[Last modified August 29, 2005, 09:58:44]