Waiting for a Miracle

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I would like to get in touch with . Sounds to me like she has PSC. Both of them live very close to me....Ed is a member of our liver support group here in Modesto.

Andi

Waiting for a Miracle

Ed Lucas, above, and Huber, below, are waiting for liver transplants.

BART AH YOU/THE BEE

December 30, 2001 Posted: 04:35:03 AM PSTBy KERRY McCRAYBEE STAFF WRITER Ed Lucas, a former forklift driver from Modesto, has a desperate wish for the new year. So do Huber, a young woman from Livingston, and s, a grandfather from Modesto. They wish for organ transplants, operations that could save their lives. Like the 80,000-some people throughout the nation who wait for transplants, their circumstances vary. Lucas, 54, may have contracted his liver disease after a blood transfusion in the 1970s. He has given up his job and his beloved weightlifting. His wife, Missy, said he saves his energy for more important things, like taking showers and getting dressed. Huber, who also has a liver disorder, doesn't have much energy to save. The 19-year-old recently passed out on a Greyhound bus and has been in a Bay Area hospital bed for the past five weeks. s, another liver patient at a Bay Area hospital, looks forward to visits from his grandchildren. They, along with his son and daughter-in-law, are selling candy to raise money to pay for expenses connected to the 51-year-old's medical care. While their stories differ, the reason they wait is the same: "There just aren't enough donors to go around," said Sam Oliveros of Modesto, who visits hospitals on behalf of the California Transplant Donor Network. Consider: About 7,300 people in Central and Northern California are waiting for organ or tissue transplants. A new name is added to the nation's transplant waiting list every 14 minutes. In 2000, about 5,700 people throughout the nation died while waiting for transplants. Those who eventually receive transplants often get the needed organs and tissues from family members. Huber spent much of her young life in foster care. The young woman has contact with her biological mother, but she is not a suitable donor. A series of foster parents, including Patty and Steve Craig of Livingston, raised Huber. The couple panicked when the teen vomited blood, a result of ulcerative colitis. They cared for her after an operation to try to undo the effects of the disorder, which attacked her liver. Huber's poor health caused her to miss school. She didn't graduate. She ultimately moved in with a boyfriend, then with a friend's mother in Yreka. Just over a month ago, she decided to come home to Livingston on a bus. Passengers thought Huber was sleeping when the bus pulled into Modesto. It turned out that she had been unconscious during much of the ride. Doctors at Lucile Salter Packard Children's Hospital at Stanford are testing Huber's brother, Tyson, to see if part of his liver might help her. If he is a good match, the transplant could take place just after the new year. If not, Huber will go back to waiting for what's called a cadaver donor: the body of a person who has agreed, or whose family has agreed, to donate organs or tissues after death. Lucas, the former forklift driver, said he remembers the night he was offered a new liver from a cadaver. It was 8:30 p.m. A friend and her family knocked on the door. They explained that their sister died of a brain hemorrhage earlier in the day. Would he like her liver? Lucas said yes. Lucas arrived at California Pacific Medical Center in San Francisco at 2 a.m. One hour before surgery, the telephone rang in his hospital room. His wife answered. There would be no transplant, a doctor told her. Cancer had been found in the donor's body. The risk that Lucas would contract the disease was too great. Lucas laughs about his "dry run" now, but he wants others to understand the process, called directed donation. Family members of someone who dies, who happen to know someone in need of a transplant, can specify that organs or tissues go to that person. Organizations that coordinate transplants handle the specifics. The system isn't well known, said Oliveros, of the California Transplant Donor Network. Neither is a process in which relatives of someone who is sick, and who themselves are not matches for their ailing relative, donate organs or tissues to someone else. The sick relative then moves up on the waiting list for a transplant. Doctors and others are searching for more effective ways to increase the number of potential donors. "The problem is, what's the incentive to be a donor?" asked Dr. Berquist, who is treating Huber at Stanford. The American Medical Association is debating paying people to donate organs, which is illegal now. In some countries, Berquist said, authorities assume that people are donors unless they say otherwise. Berquist said he likes that idea, provided everyone learns about brain death, which signals the end of life. He also supports a new law that will establish a database of people willing to be organ donors when they die. Under the system, anyone getting a new or renewed driver license or ID could fill out a form, to be mailed to a state-run registry. If a hospital has a patient on life support who is considered a potential donor, staff members would contact an organ-procurement organization, which would check the database to determine if the patient is listed. The registry should begin once organizers raise the money to run it, roughly $800,000. Berquist urged people to consider becoming organ donors. "It's sort of remote to think, 'Why would I want to be an organ donor,'" he said. "But it's a wonderful experience for the families. It's like, 'Wow, my spouse or my family member is still alive in that person.'" s, the Modesto grandfather, is likely to receive a new liver from someone who has died. His son and daughter-in-law, and Hollie s, believe that he will be operated on soon because he is very ill. Insurance will pay for the procedure. The problem, Hollie s said, is that doctors require her father-in-law and a family member to live close by the San Francisco hospital for one month in case of an emergency. The two-bedroom apartments the hospital sets aside for this run $1,650 a month. Insurance does not cover the cost. and Hollie s, who have four children, can't afford the rent. s will leave his job at International Paper for a month to care for his father. 's employer will give him three days' pay, but that will not be enough to cover the family's house payment, bills and other expenses, his wife said. The family just purchased a new home with a room for Grandpa . The family is selling candy and last week held a neighborhood carnival, hoping to raise the money that they expect they'll need. The family has collected $300 so far. They've set up a fund for contributions at the downtown Modesto branch of Valley First Credit Union. The s family can't wait to have their grandfather home again, laughing and telling jokes like he used to. They recently surprised him in the hospital, walking into his room to find him wearing a Santa hat. Hollie s said she has spoken with other families of transplant patients and asked them how they plan to pay for after-hospital stays. "Everybody I talked to, they're doing their own fund-raisers, they're running up their credit cards," she said. "Some are losing their homes."