Cystic fibrosis brought them together, now keeps them apart

Samantha Peterson never had a boyfriend. Relationships don't come easy when you're always in the hospital.

Brian Jenkins knows the feeling. Girls liked him, but they always treated him like a pet because he was so tiny.

One day, they found each other — in cyberspace. They typed messages and laughed and learned they had a lot in common, including the disease that brought them to this Web site. Samantha and Brian and all the others were members of a club nobody would ever want to join. They could relate to violent coughing attacks and what it feels like to be drowning. They had spent more time in children's hospitals than in school. Brian shared his good fortune: Eight years after a double lung transplant, he was doing fine.

But like anybody with cystic fibrosis, he knew you can't take anything for granted.

It didn't take long for these computer sessions to grow into much more for Samantha and Brian. Each found their first love. Their families were thrilled. It didn't matter that Brian, at 25, was seven years older.

The joy was short-lived. In November, Brian's lungs failed and he landed in the emergency room at a hospital near his home in West Palm Beach. A few weeks later, Samantha suffered a similar attack and ended up in Tampa General Hospital. Her kidneys and liver shut down and she fell into a coma.

Today, Samantha and Brian are a thousand miles apart, waiting for calls that could save them.

• • •

Just a few months ago, life was so good.

"I had never seen Brian so happy,'' said his mother, Julie, a data processor for the Palm Beach County school district. "He kept talking about this Samantha. When he was on the phone with her, you knew it because his voice just soared. I had never seen him connect with anybody like that.''

Chelsea Peterson, 19, saw a similar spark in her sister.

"My older sister (Meaghan, 22) and I were like, 'You're how old? And he's how old?' We were kind of iffy about it all. But they have a unique connection. They talked on the phone and computer for 12 hours a day. I said, 'How in the world can you possibly talk all day like that?' She told me, only CF kids know how each other feels.''

After five months of chatting online and by phone, they finally met. Eileen drove Samantha across the state to West Palm Beach. Like Samantha, Brian has two older sisters, Kathleen and Jamie, who are both healthy. Says Brian: "I was the lucky one.''

Brian and Samantha took in a movie, Eagle Eye. Mainly, they just spent every minute together until it was time for her to leave.

The two mothers compared notes and gave their stamp of approval. "The minute we met Samantha,'' said Julie, "we just fell in love. She is just so sweet.''

At Halloween, Brian drove over to see Samantha in St. Petersburg. He didn't feel well but tried to stay upbeat. In the eight years since his transplant, Brian had rarely even seen the inside of a hospital. "Still,'' he said last week, "I always knew it would happen. I always knew these lungs wouldn't last forever.''

By the time he got home, Brian was wheezing. His condition deteriorated rapidly and he went by ambulance to Palms West Hospital. It's still not clear why, but his body was rejecting his lungs. On Nov. 8, his family flew him to St. Louis and Barnes Jewish Hospital, where surgeons had saved him once before at age 17.

Cystic fibrosis restricts growth in its victims, and Brian is only 5-feet-2 and 100 pounds. But while Samantha fretted, he fought with the strength of a much larger man. He recovered enough to accept visitors, and two weeks before Thanksgiving, Sam and Samantha drove the thousand miles with only a few stops. Samantha sat with her boyfriend in his hospital bed while Dad snapped the photograph that accompanies this story. It is the only picture of Samantha and Brian together.

On Nov. 30, it was Samantha's turn. "She coded,'' her father said. "We didn't think she would make it.''

• • •

When it seemed the news could get no worse for the Petersons, it did. On Jan. 2, after an exhausting vigil at Tampa General Hospital, Samantha's mother, Eileen Peterson, went to her home in St. Petersburg, stretched out on the couch — and died. Her heart disease had gone undetected. She was 52.

Samantha — Sammie to her family — woke from her coma days later. She couldn't understand why her mother wasn't there. Eileen was always there when Sammie was in the hospital, usually at All Children's in St. Petersburg. She had become an authority on cystic fibrosis after Sammie, the youngest of three daughters, was diagnosed eight months after birth. Eileen had even gone back to school and become a nurse.

Now Sam Peterson had to tell Sammie her mother was gone. He isn't especially religious, but on Jan. 9, the day before Eileen's funeral, he slipped into the chapel at Tampa General and prayed. Then he went to see Sammie.

Sam is a bear of a man, 6-feet-2 and 285 pounds. He bent down to Sammie and brushed her dark hair back with a huge hand hardened by years of fixing turbines, boilers and other heavy machinery. He whispered there was another angel in heaven watching over her, and Sammie figured her grandmother must have died.

Her father told her the news.

Sammie's eyes widened and filled with tears. Sam looked around the room.

All the doctors and nurses were crying.

• • •

In the past four years, Dr. Mark Rolfe, Samantha's pulmonologist, has treated 28 cystic fibrosis patients who received double lung transplants. Twenty-seven survived. The other, a woman in her mid-20s, contracted an infection — "bad bugs'' — and died six months later.

He has high hopes for Samantha. She's working hard to get stronger. LifeLink is on alert for the perfect match, which depends on size and blood type. The other night, the doctor's beeper went off. He rolled over and saw 8353 flashing. That code means an organ has been secured.

"God, I hope it's for Sammie,'' Rolfe said to himself.

He calls her his "little munchkin.''

The average wait for healthy lungs is four months. One recent patient waited 18 months but another waited only 72 hours. "It can happen,'' Rolfe said.

A transplant patient has a 68 percent chance of surviving at least five years, he said. Even when lungs are replaced, patients still must deal with cystic fibrosis in the sinuses, sweat glands, pancreas, intestines and elsewhere. There is always the chance that the "bad bugs'' will infect the new lungs. Antirejection drugs compromise the immune system, and patients must always be on guard against germs.

"This is what we call the CF handshake,'' Rolfe said, bumping elbows.

Rolfe has patients who have gone a dozen years with new lungs. Every day, he says, doctors learn more about the inherited disease that affects 30,000 children and adults in the United States, according to the Cystic Fibrosis Foundation.

"We're getting smarter,'' he said. "The therapies we have now, when I was a fellow (in 1992), nobody knew about them except some scientists in a rat lab.''

• • •

Sam Peterson sleeps in a chair outside Samantha's room, no easy trick for a man his size. He rests only a little better in the back seat of his 1998 GMC Yukon, which has logged 248,000 miles. Occasionally he travels to Homosassa in Citrus County to check on his house, where the family lived more than 10 years, near the Progress Energy power plant at Crystal River where he worked on turbines. He slumps with fatigue. He stares into space.

Since all this happened, he hasn't been able to work. Money is tight. He says he still must come up with payment for Eileen's funeral.

But he's there for his baby. He holds the phone by her ear so Brian can talk to her. He makes her promise to get better.

On Jan. 18, Sam mentioned to Sammie that he was going to the park in Gulfport where he married Eileen on the same day 23 years ago. A trach tube kept her from speaking, but Sammie reached for her whiteboard and marker.

"Can you get a rose for my mom and leave it at the park?''

Sam's dream is that his daughter will be able to place the rose herself next year. And in a hospital in Missouri, a young man has dreams of his own. By all accounts, they are what they need.

A perfect match.

Bill Stevens is the North Suncoast editor. You can reach him at (727) 869-6250 or at stevens@sptimes.com.

FAST FACTS

Cystic fibrosis

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive systems of about 30,000 children and adults in the United States and 70,000 worldwide. It causes the body to produce thick, sticky mucus that clogs the lungs, obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. In the 1950s, few children with CF lived to attend elementary school. Many people with the disease today live into their 30s, 40s and beyond, according to the Cystic Fibrosis Foundation.

Transplants

In December, 148 people were on the waiting list for lung transplants in Florida and 2,082 in the United States, according to the newsletter at Tampa General Hospital, which marked its 150th lung transplant since June 2002. To become a registered organ donor, you can complete a form at a driver's license office or go online at lifelinkfound.org.

Cystic fibrosis brought them together, now keeps them apart 02/07/09 [Last modified: Monday, March 9, 2009 7:18pm]

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