Stepping into a new life

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The call came at 1:45 a.m. It had been a normal evening – 14-year-old Kelsi-Rae Moreshead and her 10-year-old brother watched the movie “Hide and Seek” in her bedroom. Her father dozed in the living room. Karen Smith, Kelsi-Rae’s mother, cleaned the house for company. Kelsi-Rae, a thin girl with a passion for punk rock, horror movies and the color pink, hooked herself up to the dialysis machine for a 12-hour cycle. She had dealt with progressive kidney disease since she was 6, in charge of her own home dialysis since she was 13.

The past six months had been among the hardest, forcing Kelsi-Rae to battle back from a searing, near-fatal infection. Doctors warned that her body probably couldn’t handle another medical crisis.

And now, on the other end of the phone, a transplant coordinator was telling Smith that the death of a local child might save her own child’s life. The ordinary night suddenly turned extraordinary.

Smith expected excitement when she woke her daughter. Instead, under her pink comforter, Kelsi-Rae began to cry.

One ordeal was behind her, but another was about to start.

She didn’t want to go.

Kelsi-Rae was 6 when she suddenly stopped urinating. Doctors ordered a kidney biopsy.

She was awake but sedated when they inserted the large needle into her side. Eight years later, she still remembers the pain, the dark bruise that lingered for weeks.

The diagnosis came within days: focal and segmental glomerulosclerosis. To doctors, it’s an unusual genetic disease that can lead to kidney failure. To Kelsi-Rae’s mother, it’s a villain.

“The disease is cunning, baffling and very powerful,” Smith said.

Her daughter started on dozens of pills, including steroids, blood pressure medication and drugs usually reserved for cancer. She began a special diet – no sodium, no potassium, very few liquids – that meant a ban on dozens of favorites, from bananas and peanut butter to sports drinks and Coke. Limited to only 15 ounces of liquid a day, the first-grader sucked on ice chips or green apple Jolly Ranchers when she got thirsty.

Later, to sweep her bloodstream clear of the toxins, she went to dialysis six hours a day, three days a week. When she got older, a home dialysis machine did the job every night.

Maine Medical Center soon became an unhappy second home. She was there even during the birth of her younger brother, Noah. Her mother and the hours-old newborn shared Kelsi-Rae’s hospital room.

“After the 100th visit I stopped counting,” her mother said. “After the bills topped $1 million, we stopped adding them up.”

Doctors gave her only one hope: a kidney transplant.

No friends or family members matched, so doctors placed her on a list for an anonymous donor. Patients earn points based on their age, their health and how well they care for themselves. The more points they have, the higher on the list they go.

Kelsi-Rae was young, very sick but healthy enough to withstand a transplant. She’d shown she could take care of herself, sticking with her diet, tracking her daily health stats in a thick white binder, keeping her childhood bedroom stacked with dialysis bags and boxes of medication.

For a year, she hovered high on the list. The family moved from Sanford to Auburn and Kelsi-Rae enrolled in middle school. She joined the field hockey team and celebrated six months without a hospital stay, her longest stint ever.

Then, in February, she woke up with sharp pains in her stomach.

When and if

Her mother thought the home dialysis machine had caused gas. The dextrose entered through a catheter in her stomach and it sometimes brought air bubbles.

But nothing helped, and the family trekked back to Maine Med.

An infection, not an air bubble, had found its way through the catheter. Kelsi-Rae missed her 14th birthday and her school’s Valentine’s Day dance, barely coherent in the hospital. Twice, a kidney became available, but she was too sick to accept it. It took her more than a month to recover.

After that illness, she shot to the very top of the transplant list. The call, doctors said, could come at any time.

But Kelsi-Rae had heard that before. March slid into April, which slid into May. She split her time among school, dialysis and long tutoring sessions to catch up in class. One night, in a slim pink dress, she put off dialysis for a few hours to go to her eighth-grade semi-formal.

At the end of June, Kelsi-Rae continued to talk about the transplant in uncertain terms.

“You shouldn’t say, If I get a kidney transplant,'” her mother said as they sat in the living room. “You should say when.'”

“Yeah,” Kelsi-Rae said quietly. “When.”

Even though it would free her from daily dialysis, her strict diet and the constant threat of hospitalization, she wasn’t sure she wanted a new kidney. As hard as it was, she’d known only this life for eight years. Dialysis didn’t hurt, she said. She knew a transplant operation would.

So when her mother woke her in the wee hours of a humid July night, Kelsi-Rae was not happy.

“I’m not going,” she said. “I don’t want it.”

But as the family rushed to pull on clothes and leave, she relented. Still in her pajamas, Kelsi-Rae grabbed her silver cell phone and got into the car.

During the hour-long drive to Portland, she phoned everyone she knew.

“I got the call,” Kelsi-Rae told her friend, Brittney. “I got the call!”

She shook as she dialed the phone.

Light pink

At the hospital, she handed her dad her yellow LIVESTRONG and blue Red Sox bracelets to slip over his wrist for safekeeping.

Her youngest brother, Noah, gave her his favorite Winnie the Pooh doll to keep her company during the operation. Her 10-year-old brother, Elijah, paced.

Her mother had been eerily calm since the phone call. But when Kelsi-Rae began to cry, she burst into tears, too.

“We had to say goodbye in the holding room,” Smith said. “Before, with other operations, I could wait with her.”

As Kelsi-Rae went into surgery, the transplant coordinator showed Smith and James Moreshead, Kelsi-Rae’s father, to a small, incubator-like container. Inside, their daughter’s new kidney pulsed with pumping water.

“It was light pink,” Smith said. “Kelsi-Rae’s favorite color.”

The surgery lasted three and a half hours. With an 8-inch incision from her belly button to her hip, doctors placed Kelsi-Rae’s new kidney beside her diseased ones. They left the bad kidneys in, bypassing them by hooking the new kidney to a different vein.

They told the family it would be a day or two before the kidney could filter blood and produce urine.

It took only three hours.

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Chocolate milk and sleepovers

A day later, tired and sore, Kelsi-Rae moved to a private room with a view of the city and Hadlock Field. But the teenager was more interested in a wireless black laptop and the pump that administered heavy pain medication with a soft “beep” when she pressed a button. Tubes stuck out of her neck and her side, but she felt well enough to joke about getting her belly button pierced, and to roll her eyes when her mother said no.

She’d already had an entire cup of chocolate milk, twice the amount she’d been allowed for eight years. Still, she looked forward to something else: a sleepover.

Between her illness and her nightly dialysis, Kelsi-Rae had never been to one, never hosted her own.

But so soon after surgery, her mother still held her breath. Kelsi-Rae’s body could reject the kidney. Her disease could ravage this new organ, forcing a lengthy hospital stay and an experimental procedure to send it into remission.

It will take months before they know if she’s safe.

“I’m happy it’s over. But it’s not all over yet,” Smith said.

Kelsi-Rae showed more optimism.

“It’s going to be fine,” she said. “No, it’s not going to reject.”

Then, connected to tubes and IVs, her incision just over a day old, Kelsi-Rae insisted on getting up.

With help from two nurses, she lurched from the bed to a waiting wheelchair. She yelped with every jostle.

“Honestly, you don’t have to do this yet,” one of the nurses told her.

But Kelsi-Rae pushed herself. If she was going to feel better, she knew she would have to.

In the wheelchair she sat with a sigh. She’d taken her first steps into a new life.

They were painful, but she was happy

“You know, I want to be a doctor now, I think,” she said. “I want to help other kids.”

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