Wait is on for life-saving organs

Wait is on for live-saving organs
Donations are up, but need outstrips supply; several efforts under way to try to ease shortage
Chris SwingleStaff writer
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(July 19, 2007) — When Chris Goossen's kidneys stopped working at age 21, he began dialysis treatments, 12 hours a week. Within three years, he received a cadaver kidney transplant that freed him from dialysis, restored his energy and returned him to good health.
Eventually, however, his body rejected the new kidney. He went back on dialysis and the transplant waiting list. That was nearly five years ago.He's still waiting.
Three times a week, after his building maintenance job at Thomson West, he must be hooked up to a dialysis machine, four hours at a time, to survive.
Goossen, 37, of Rochester, is living the results of a worsening shortage of deceased-donor organs.Although more organs are being donated, the increasing need for transplants outstrips the supply.
More than 800 people are on waiting lists for organ transplants at Strong Memorial Hospital — the only area hospital that performs transplants. Nearly 100 patients have been waiting five years or more.
Some people run out of time. In 2006, 69 people died while on the transplant waiting list at Strong. Eight others were removed from the waiting list because they were too sick for a transplant.
"This is a health care crisis with a cure," says Rob Kochik, executive director of the Rochester-based Finger Lakes Donor Recovery Network, which serves the 19-county region. "We know that transplants work."
The supply of organs locally doesn't meet the need here. In 2006, 43 deceased people donated organs and 286 donated eyes/tissue, with some overlap, in the region coordinated by the Finger Lakes network and the Rochester Eye and Human Parts Bank.
Strong Memorial Hospital performed 316 transplants in 2006 — a 36 percent jump from a record 232 in 2005 — including 33 from living donors.The demand for kidneys, in particular, has skyrocketed locally and nationwide. In the early 1990s, about 60 people were typically on the waiting list in Rochester for a kidney, and the average wait was 12 to 18 months. Now there are 280 people waiting for a kidney, and the average wait is four to five years, says Jan Miller, executive director of the National Kidney Foundation of Upstate New York.
Several efforts are trying to address the organ shortage.
LifeSharers is a controversial nonprofit national network of organ donors organized in 2002. It is based in Nashville. People who register with LifeSharers, which is free, promise to become organ donors upon their death; LifeSharers members are first in line. That approach would circumvent the existing national system of matching organs to recipients based on medical urgency of the patient, time on the waiting list and distance between donor and recipient. The founder of LifeSharers believes his effort would ultimately lead to more donors and more transplants for nonmembers as well.
New York state officials are studying a switch to a presumed consent system, which would assume people want to donate organs at death unless they specify otherwise. Some European countries use an opt-out system, but it doesn't exist in the United States. In March, a state Health Department committee assigned to study the question said it needed more time.
New York officials are changing the state Organ and Tissue Donor Registry from one of "intent" to donate into one of "consent" to donate. Signing your driver's license or joining the state registry online aren't enough to ensure you'll become an organ donor. Your next of kin would need to give consent.
New York is trying to raise more money for organ and tissue donation outreach and education. Driver's license applications have a new checkbox to add a $1 donation to the Life ... Pass it On Trust Fund. Pennsylvania generates about $800,000 per year this way and consistently has more deceased donors than New York despite a smaller population, the New York Alliance for Donation says.
Some states offer tax deductions for expenses such as travel, hotel bills and lost wages for live organ donors.Dr. Adel Bozorgzadeh, transplant services director at UR Medical Center, says greater public awareness of the need for organs would help. "This comes out of the goodness of the hearts of people," he said. "The donors are really the heroes."
Organ procurement officials encourage everyone to make their wishes known: Tell your family whether you want your organs donated so relatives won't be faced with guessing at a time when they're grieving.
Fewer than 5 percent of people will ever have the chance to donate organs at death, by dying on a ventilator. This can happen after a car accident, gunshot wound, cardiac arrest, asphyxiation, stroke or brain hemorrhage.
Many more people — about 29 percent of those who died in hospitals in the Rochester region in recent years — are eligible to donate tissues, such as eyes, skin, heart valves, bone, blood vessels and tendons.
Donated skin can save a burn victim's life. A donated bone segment can save someone from amputation. Allograft heart valve implants, unlike artificial valves, allow people to avoid life-long dependence on blood-thinning medication. Donated veins for bypass surgery preclude the need for a second surgical site for the patient.
Almost 200 cornea transplants each year in the Rochester region restore vision to blind or visually impaired people. Dorothy Turner of Henrietta was struggling to see before she had cornea transplants, first in 1983 and the second eye in 1990. The first transplant allowed her to keep working as a kindergarten teacher in the City School District. Now retired, she's still able to drive, to garden and to see her three grandchildren.
Steve and Ellen Karnisky of Greece know that at least 20 people benefited from the organs and tissue from their 15-year-old son, Rich, who died in a car accident in June 2000. "It's a way to have snatched good from evil," his father said.
One donor giving multiple organs and tissue can help more than 50 people.Organs and tissue not good for transplantation still can be donated for research.
Organs donated for transplant are distributed through the national United Network for Organ Sharing (UNOS) system. It looks for the best match based on criteria such as blood type and size of the organ. For certain organs, other factors — including medical urgency of the recipient and immune-system match — are vital.
LifeSharers believes that people who are willing to be organ donors themselves should get priority on waiting lists. Their members sign donor cards — from lifesharers.org, (888) 674-2688 — instructing their family and organ procurement officials to call LifeSharers for its members' names, to choose the one who's highest on the UNOS ranking for each organ. Federal and state laws allow donors, living or deceased, to direct donations to a particular person.
But Kochik, whose network coordinates all organ donations locally, says a list of people isn't the same as one name and that the LifeSharers approach couldn't be followed because it conflicts with the national system.
David Undis, executive director of LifeSharers, says if transplant coordinators refuse to look at his list, he could give them just one name, but it might not be the best match.
LifeSharers membership nearly doubled in the last year to 9,287. So far, none of its members have died in a way that their organs could be donated.Dr. David Kaufman, medical director of surgical intensive care at UR Medical Center and a medical ethicist, doesn't believe that neither LifeSharers nor financial incentives will improve the organ donation system. Financial incentives could make the reasons for donation murkier and, in the long run, lead to fewer donations, he says. LifeSharers would disrupt the national system to jump their members ahead in line.
During a recent dialysis session at New York Dialysis Services' Strong Health Dialysis center in Brighton, Goossen said that he signed up with LifeSharers in the hope that he'll get a kidney sooner. "I'd be willing to take any steps necessary to increase my chances of getting one," he said.
Some people get a kidney transplant from a live donor, typically a relative or friend. Goossen says he's not comfortable asking someone for such a sacrifice. If the organ didn't work initially, or didn't last, he'd feel terrible, he said.
Goossen has been called twice in the past year with news that a cadaver kidney was available. But, both times, final testing at the hospital canceled the transplant.
A second kidney transplant is a harder match, but the prior transplant doesn't change his place on the waiting list.So Goossen waits and hopes. "I get very impatient," he admitted. He's looked at a Web site offering kidney transplants for $70,000 in China — a country that has allowed use of organs (allegedly donated) from prisoners executed hours or days after arrest. He's also looked at a Web site offering to match live donors with recipients for an administrative fee.
Goossen wishes more people would donate organs after they die and doesn't understand why they don't. "They don't need them," he says.CSWINGLE@DemocratandChronicle.com