Woman gained miracle kidney, funding restrictions helped take it away

Thousand Oaks woman gained miracle kidney, funding restrictions helped take it away
By Tom Kisken

Friday, July 22, 2011

An hour before sunrise, Jeannette Castaneda unfurled a bed sheet over a reclining chair to keep pale green vinyl from clinging to her arms. She huddled under a blanket as a technician jabbed her with a needle, leashing her to the machine that does what her kidneys cannot.

Because she needs a miracle. Again.

Ten years ago, when Castaneda was a junior at Thousand Oaks High School, a kidney given by the family of an unknown donor transplanted her life from fatigue and illness to energy and hope.

"I felt brand new," she said of what seems a distant memory.

That feeling ended when Medicare stopped paying for anti-rejection medicine because of controversial restrictions that too often push people at least three years removed from transplants into a free fall. When the flow of medicine stopped, Castaneda's new kidney shut down like a broken clock.

Castaneda knows nothing about Medicare's regulations or the reasons for them. When her kidney failed in 2006 because she couldn't afford $1,500 a month for immunosuppressives, she was a community college student who worked part-time as a tutor at the Boys & Girls Club of Moorpark.

"It's basically saying they don't care if we have a way to pay for stuff or not," she said. "It meant find your way to pay for your medicine or you're screwed."

Now, and for the past five years, the 26-year-old Thousand Oaks woman rises at 4:15 a.m. three days a week, pulls on a hooded sweatshirt and drives the half mile to her dialysis center. She watches "The Fresh Prince of Bel-Air" reruns as plastic tubes feed her blood into a mechanical filter. After four hours in the chair, she feels lucky to have the energy to climb the stairs at home to the bedroom decorated with an Al Pacino poster.

Her cellphone rests on a chair-side table during dialysis. When she receives calls from area code 310, she wonders if the wait for a second transplant is about to end, though the limbo could stretch five more years. Or longer.

"I could be 31 probably when I get my transplant. 31," she said, mulling over a life placed on hold. "What I think about is what I've done in my life. It's not much."

Medicare covers dialysis for as long as people need it, also paying nearly all of the costs for a kidney transplant. In Southern California, that means nearly $200,000, twice the national average. But the federal government ends its $17,000 a year payments for anti-rejection medicine and other care 36 months after the operation. Defenders of the limits say transplants free people from renal disease, allowing them to provide for themselves and find jobs that offer insurance, which would pay for the anti-rejection medicine.

"We help you and now you need to help yourself," said Ilana Berg, an outpatient kidney transplant coordinator at Ronald Reagan UCLA Medical Center. "This is the reason you were given a second chance."

'Everything was perfect'

She smiles nonstop, even when crying as she talks of her mother who died of ovarian cancer. Her eyes are tired. Her wit is sharp. She teases everyone from the technician who checks her blood pressure to the photographer squeamish about blood.

"You want me to let it go?" she said of tape and gauze that keep her arm from gushing after dialysis.

Castaneda lives in a Thousand Oaks town house with her father who works in construction, her sister and a 9-year-old niece. Still a student at Moorpark College, she's working to become a registered nurse in a career choice sparked by the caregivers who didn't understand what it's like to be 12 and diagnosed with kidney failure.

"They'd be like 'Hurry up and take your pills'" she said. "Those nurses are the ones who inspired me. ... I want to do better."

Her problems started because a condition called vasculitis inflamed blood vessels and killed cell tissue in her kidneys, causing both organs to fail. She slept attached to a home dialysis machine. She pingponged in and out of the hospital, missing most of junior high.

After four years of waiting, she received the call from UCLA Medical Center at 5 a.m. on March 17, 2001. An organ donor with O positive blood had just died. Her transplant was set for that night. She remembers little of what happened, memories blurred by the fear and excitement.

Nothing is fuzzy about the changes the transplant brought.

Instead of relying on a machine to rid her body of waste fluid, she went to the bathroom like anyone else. She could eat bananas, oranges and other foods high in potassium, regulated by the kidneys. She graduated from high school and started working at Orange Julius, then adding a second job at Papyrus.

Castaneda took about 20 pills a day, most designed to relax her body's immunities and keep a cavalry of white blood cells from mistakenly attacking the kidney. Medicare paid for 80 percent and the rest was picked up by the state and federally funded insurance program for poor and disabled families, Medi-Cal.

"Everything was perfect," she said. " ... I had so much energy. I could see everything differently. I felt born again."

Scrambling for purchase

Social workers and financial counselors start explaining Medicare's 36-month rule as soon as people are considered for transplants, said Berg of UCLA.

"We tell everyone, 'You will lose your Medicare,'" she said. "It is nothing that is hidden."

But advance warning has limited value, said Dr. Anthony Capparelli, Castaneda's kidney specialist. Fatigue, anemia and other illnesses keep most people from working full-time during dialysis. The transplant helps but employers aren't leaping to hire people with histories of disabilities who have been out of work for several years.

"I think it's fairly wishful thinking," he said of the premise that people can find private insurance three years after a transplant. According to a 2009 survey by the American Society of Transplantation, a research and advocacy group, only three in 10 kidney transplant recipients are covered by private insurance.

If advance warnings were delivered to Castaneda, she never heard them. Shortly before the coverage was dropped, she received a letter from Medicare telling her she was no longer disabled. Correspondence from Medi-Cal said state benefits were disappearing because she turned 21 and was no longer a child.

She scrambled for footholds. Transplant nurses at UCLA gave her a temporary supply of anti-rejection meds and referred her to pharmaceutical companies that did the same. Together, the supply gave her a few months. She went to private insurance companies but was told it would be hard, maybe impossible, for her to get coverage because of her kidney problems.

A drug called Prograf ran out first. Then another immunosuppressive, CellCept, went dry.

Castaneda tried to convince herself she might be OK even without the drugs.

"I was hoping there would be a miracle, that I wouldn't need the medication," she said.

Losing the fight

Dolores Castaneda was the woman who cleaned compulsively, never told her age and always found a way to get her daughter the health care she needed.

She died on March 16, 2005, of cancer that spread to her liver. A year later, when there was no more money for immunosuppressives, Jeannette Castaneda was on her own.

"This probably wouldn't have happened if she was here," said Castaneda as she cried. "Maybe I didn't try hard enough to find help."

The pain started on her right side, over the transplanted kidney, and radiated toward her back. Castaneda was tired all the time. She felt nauseous. She ended up at UCLA Medical Center. Doctors told her it was over.

"They told me my kidney was absolutely gone," she said.

Not many choices

She returned to the transplant waiting list in 2006, shortly after surgeons removed the first kidney. She worries about it happening again — getting another miracle and losing it when Medicare pulls funding for medicine.

"I think about it a lot," she said. "Maybe I'll be a nurse by then and be able to get insurance."

The jeopardy doesn't change the dream. The reward is too powerful. The alternative is grim. At the dialysis center, Castaneda sat with fingers pressed over bandages to keep her arm from bleeding. A technician named Noe told her she was good to go.

"See you on Wednesday," he said.

"Unfortunately," she answered quietly.

Follow our ongoing coverage in this series here. http://www.vcstar.com/news/2011/jul/22/kidneypackage/

http://www.vcstar.com/news/2011/jul/22/thousand-oaks-woman-gained-miracle-kidney-helped/