Round Rock teen gets rare gift of a kidney, then copes with rare failure, Austin, Texas

Doctors are hopeful that a second kidney donation will come through, despite fresh challenges.

By Mary Ann Roser

AMERICAN-STATESMAN STAFF

From the time she was 11, Juliana Casey's life has been filled with painful needle sticks, hospitalizations and the creeping realization that her kidneys were dying. She lost three years of schooling to sickness and was on eight hours of nightly dialysis for five years. As she got sicker, the dialysis was pushed to 16 hours a day in March, she said.

So when a longtime family friend stepped up to donate a kidney last spring, Casey thought that at age 19, she was on the brink of a normal life. She was ecstatic and grateful for the rare gift. But the April 2 transplant did not have the happy ending that she, the kidney donor and her family envisioned.

And now Casey faces a second transplant, which doctors say is more challenging than the first. Her transplanted kidney, the only one that's working, is functioning at about 20 percent of capacity, said Dr. Fadi Abouzahr, Casey's San Antonio-based nephrologist. "Six months is about the longest I would give the kidney, for sure," he said.

About 15.7 percent of people who have received a kidney are on the waiting list for another one, according to data from the United Network for Organ Sharing , which oversees organ procurement nationwide. Although many of them lived with their first kidney for years — transplanted kidneys last, on average, 10 to 20 years, but some last for the lifetime of the recipient — some, like Casey, didn't get that chance.

More than 16,500 people received kidney transplants in the U.S. in 2009, the last year for which statistics are available. And every year, 4,500 people die waiting for a kidney, said Dr. Adam Bingaman , director of the live donor and paired donor transplant program at Methodist Specialty and Transplant Hospital in San Antonio, where Casey is being treated.

Casey already feels the telltale signs of kidney failure.

"I'm getting a little more tired," she said from the Round Rock home where she lives with her parents. "My feet are swollen, and the skin aches (from water retention). I actually have stretch marks on my ankles."

"She's anemic, too," chimed in her mother, Kathy Casey.

"It's just a bummer," Juliana Casey said in her typical, understated way, "and I'm not going to be miserable or sad about it."

She is working and going to school. She is trying to keep up with her friends and hopes time does not run out before her kidney fails completely.

An unexpected complication

Less than eight months ago, Casey's long struggle with kidney failure brought on by lupus nephritis, an autoimmune disorder that attacked her kidneys, appeared to be nearing an end. Several friends and others had stepped up to donate a kidney. One matched.

Casey would be getting the kidney of longtime friend Leslie Kroschewsky, now 24, of Pflugerville. Their families, who knew each other from St. Elizabeth's Catholic Church in Pflugerville, have been friends since Casey was about 6.

"She's just the sweetest thing," said Kroschewsky, a teacher. "She's been sick for the longest time. I have two kidneys, but I only need one. It's not anything I really questioned. I don't want Juliana to suffer any longer than she has to."

Casey, who was featured in the Statesman last year when her family was raising money and considering a transplant in California, was "so excited about the kidney and all the things she could do," Kroschewsky said.

Almost immediately after the operation, Casey reacted to Prograf, a main drug given to keep a transplant recipient from rejecting an organ, doctors said. That happens in just 3 percent of cases, Abouzahr said. Within three days, Casey was off the drug, but the damage was done, he said.

"She had acute kidney failure," he said. "It was like setting the kidney on fire."

Casey was in the hospital for nearly a month and had several blood transfusions.

"It was disappointing," she said. But "I had my family around me. You don't focus on what's happening."

"She doesn't complain," her mother said, "but I could see (the grief) in her eyes."

Her father, Dan, called the experience "surreal."

But Casey got better, and the kidney improved, too. She went home and started to experience a normal life, she told a medical ethics class at the University of Texas earlier this month.

"In spite of all the adverse reactions and all the drugs I was having to take to counteract the reactions, there was so much good happening," she told 160 students of William Winslade, an adjunct professor of philosophy at UT and a professor at the UT Medical Branch at Galveston. "I was back at home, not on dialysis, and a whole new spectrum of life opened up to me \u2026 I was no longer constantly worried about a dialysis tube accidentally getting caught on something and ripping out of my stomach. I could get up from my bed in the middle of the night to just walk around or get a glass of water — something I hadn't been able to do for five years.

"I had freedom to do so many simple and ordinary things, too many to mention today, that it seemed like a whole new life."

But it was short-lived.

Last month, a biopsy revealed the new kidney was dying. Casey needed another transplant.

"I was really sad," she said, "especially for Leslie. It was the most perfect kidney."

The donor cried at the news, Kathy Casey said. "Leslie's first words were, 'I wish I had another kidney to give her.'\u2009"

The search begins anew

Finding a second match is always more difficult, said Bingaman, director of the donor program at Methodist hospital.

A previous transplant makes the immune system more sensitive, which makes it more crucial to find a close match, he said. One option: If no one close to Casey is a good match, she can take part in a donor exchange program in which a donor agrees to give a kidney to a stranger in exchange for the donor's loved one getting a kidney from someone connected to the recipient.

Earlier this month, Bingaman completed the largest donor exchange in the U.S., he said, when 16 people received kidneys during a three-day period at the Methodist hospital.

Bingaman and Abouzahr are hopeful about a transplant for Casey. The Methodist program is the nation's largest, Bingaman said.

If her kidney fails before a donor is found, she would have to go back on dialysis, although Casey and the doctors hope that doesn't happen.

Casey said she is unlikely to be able to go back on peritoneal dialysis, which she did at home, feeding solution through a tube in her abdomen to wash fluids in her body that her kidneys could no longer cleanse. Instead, she said, she would face hemodialysis, which is generally done three times a week at a facility that uses a machine to filter the blood and send restored constituents back into the blood. Casey said hemodialysis was harsh on her. It made her nauseated, headachy and sick the next day.

Looking to the future

Casey isn't feeling sorry herself.

Despite all of the school she missed, she still graduated last year from Round Rock Christian Academy, and she enrolled in the culinary program at Austin Community College's Cypress Creek campus. She's taking a math class at ACC, to work on her degree requirements, and working part time as a sales supervisor at Crabtree & Evelyn at Round Rock Premium Outlets.

Her family isn't actively fundraising and is hopeful that because Casey went with a program in Texas, the travel expenses won't be so high. Kathy Casey said medical costs for the first transplant are about $340,000. One month's worth of bills, totaling about $50,000 during a period when Casey didn't have adequate insurance, has not been fully covered, but Kathy Casey said she thinks insurance ultimately will reimburse most of the costs.

The family is banking money it raised with the Children's Organ Transplant Association, or COTA, of Bloomington, Ind., which has helped the family raise money for transplant expenses.

"My family says that I defy the odds again and again, but if I do, it is because of God," Casey told the UT class. "My mother said that if she has learned anything throughout this journey, it is that something bigger than us controls this situation — not us."

Casey told the American-Statesman that she remains hopeful.

"I have something to look forward to," she said. "If I'm not allergic to any surprise medications, I'll be out of there (the hospital) in five days."

For now, she is waiting.