Democrat & = Chronicle: Local News

Chris=20 Swingle
Staff writer

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(July 19, 2007) =97 When Chris Goossen's kidneys = stopped=20 working at age 21, he began dialysis treatments, 12 = hours a=20 week. Within three years, he received a cadaver kidney = transplant that freed him from dialysis, restored his = energy=20 and returned him to good health.=20

Eventually, however, his body rejected the new = kidney. He=20 went back on dialysis and the transplant waiting list. = That=20 was nearly five years ago.

He's still waiting.=20

Three times a week, after his building maintenance = job at=20 Thomson West, he must be hooked up to a dialysis = machine, four=20 hours at a time, to survive.=20

Goossen, 37, of Rochester, is living the results of = a=20 worsening shortage of deceased-donor = organs.

Although=20 more organs are being donated, the increasing need for = transplants outstrips the supply.=20

More than 800 people are on waiting lists for organ = transplants at Strong Memorial Hospital =97 the only = area=20 hospital that performs transplants. Nearly 100 = patients have=20 been waiting five years or more.=20

Some people run out of time. In 2006, 69 people = died while=20 on the transplant waiting list at Strong. Eight others = were=20 removed from the waiting list because they were too = sick for a=20 transplant.=20

"This is a health care crisis with a cure," says = Rob=20 Kochik, executive director of the Rochester-based = Finger Lakes=20 Donor Recovery Network, which serves the 19-county = region. "We=20 know that transplants work."=20

The supply of organs locally doesn't meet the need = here. In=20 2006, 43 deceased people donated organs and 286 = donated=20 eyes/tissue, with some overlap, in the region = coordinated by=20 the Finger Lakes network and the Rochester Eye and = Human Parts=20 Bank.=20

Strong Memorial Hospital performed 316 transplants = in 2006=20 =97 a 36 percent jump from a record 232 in 2005 =97 = including 33=20 from living donors.

The demand for kidneys, in=20 particular, has skyrocketed locally and nationwide. In = the=20 early 1990s, about 60 people were typically on the = waiting=20 list in Rochester for a kidney, and the average wait = was 12 to=20 18 months. Now there are 280 people waiting for a = kidney, and=20 the average wait is four to five years, says Jan = Miller,=20 executive director of the National Kidney Foundation = of=20 Upstate New York.=20

Several efforts are trying to address the organ=20 shortage.

LifeSharers is a controversial nonprofit national = network=20 of organ donors organized in 2002. It is based in = Nashville.=20 People who register with LifeSharers, which is free, = promise=20 to become organ donors upon their death; LifeSharers = members=20 are first in line. That approach would circumvent the = existing=20 national system of matching organs to recipients based = on=20 medical urgency of the patient, time on the waiting = list and=20 distance between donor and recipient. The founder of=20 LifeSharers believes his effort would ultimately lead = to more=20 donors and more transplants for nonmembers as well.=20

New York state officials are studying a switch to = a=20 presumed consent system, which would assume people = want to=20 donate organs at death unless they specify otherwise. = Some=20 European countries use an opt-out system, but it = doesn't exist=20 in the United States. In March, a state Health = Department=20 committee assigned to study the question said it = needed more=20 time.=20

New York officials are changing the state Organ = and Tissue=20 Donor Registry from one of "intent" to donate into one = of=20 "consent" to donate. Signing your driver's license or = joining=20 the state registry online aren't enough to ensure = you'll=20 become an organ donor. Your next of kin would need to = give=20 consent.=20

New York is trying to raise more money for organ = and=20 tissue donation outreach and education. Driver's = license=20 applications have a new checkbox to add a $1 donation = to the=20 Life ... Pass it On Trust Fund. Pennsylvania generates = about=20 $800,000 per year this way and consistently has more = deceased=20 donors than New York despite a smaller population, the = New=20 York Alliance for Donation says.=20

Some states offer tax deductions for expenses such = as=20 travel, hotel bills and lost wages for live organ=20 donors.

Dr. Adel Bozorgzadeh, transplant = services=20 director at UR Medical Center, says greater public = awareness=20 of the need for organs would help. "This comes out of = the=20 goodness of the hearts of people," he said. "The = donors are=20 really the heroes."=20

Organ procurement officials encourage everyone to = make=20 their wishes known: Tell your family whether you want = your=20 organs donated so relatives won't be faced with = guessing at a=20 time when they're grieving.=20

Fewer than 5 percent of people will ever have the = chance to=20 donate organs at death, by dying on a ventilator. This = can=20 happen after a car accident, gunshot wound, cardiac = arrest,=20 asphyxiation, stroke or brain hemorrhage.=20

Many more people =97 about 29 percent of those who = died in=20 hospitals in the Rochester region in recent years =97 = are=20 eligible to donate tissues, such as eyes, skin, heart = valves,=20 bone, blood vessels and tendons.=20

Donated skin can save a burn victim's life. A = donated bone=20 segment can save someone from amputation. Allograft = heart=20 valve implants, unlike artificial valves, allow people = to=20 avoid life-long dependence on blood-thinning = medication.=20 Donated veins for bypass surgery preclude the need for = a=20 second surgical site for the patient.=20

Almost 200 cornea transplants each year in the = Rochester=20 region restore vision to blind or visually impaired = people.=20 Dorothy Turner of Henrietta was struggling to see = before she=20 had cornea transplants, first in 1983 and the second = eye in=20 1990. The first transplant allowed her to keep working = as a=20 kindergarten teacher in the City School District. Now = retired,=20 she's still able to drive, to garden and to see her = three=20 grandchildren.=20

Steve and Ellen Karnisky of Greece know that at = least 20=20 people benefited from the organs and tissue from their = 15-year-old son, Rich, who died in a car accident in = June=20 2000. "It's a way to have snatched good from evil," = his father=20 said.=20

One donor giving multiple organs and tissue can = help more=20 than 50 people.

Organs and tissue not good for=20 transplantation still can be donated for research.=20

Organs donated for transplant are distributed = through the=20 national United Network for Organ Sharing (UNOS) = system. It=20 looks for the best match based on criteria such as = blood type=20 and size of the organ. For certain organs, other = factors =97=20 including medical urgency of the recipient and = immune-system=20 match =97 are vital.=20

LifeSharers believes that people who are willing to = be=20 organ donors themselves should get priority on waiting = lists.=20 Their members sign donor cards =97 from = lifesharers.org, (888)=20 674-2688 =97 instructing their family and organ = procurement=20 officials to call LifeSharers for its members' names, = to=20 choose the one who's highest on the UNOS ranking for = each=20 organ. Federal and state laws allow donors, living or=20 deceased, to direct donations to a particular person.=20

But Kochik, whose network coordinates all organ = donations=20 locally, says a list of people isn't the same as one = name and=20 that the LifeSharers approach couldn't be followed = because it=20 conflicts with the national system.=20

David Undis, executive director of LifeSharers, = says if=20 transplant coordinators refuse to look at his list, he = could=20 give them just one name, but it might not be the best = match.=20

LifeSharers membership nearly doubled in the last = year to=20 9,287. So far, none of its members have died in a way = that=20 their organs could be donated.

Dr. David = Kaufman,=20 medical director of surgical intensive care at UR = Medical=20 Center and a medical ethicist, doesn't believe that = neither=20 LifeSharers nor financial incentives will improve the = organ=20 donation system. Financial incentives could make the = reasons=20 for donation murkier and, in the long run, lead to = fewer=20 donations, he says. LifeSharers would disrupt the = national=20 system to jump their members ahead in line.=20

During a recent dialysis session at New York = Dialysis=20 Services' Strong Health Dialysis center in Brighton, = Goossen=20 said that he signed up with LifeSharers in the hope = that he'll=20 get a kidney sooner. "I'd be willing to take any steps = necessary to increase my chances of getting one," he = said.=20

Some people get a kidney transplant from a live = donor,=20 typically a relative or friend. Goossen says he's not=20 comfortable asking someone for such a sacrifice. If = the organ=20 didn't work initially, or didn't last, he'd feel = terrible, he=20 said.=20

Goossen has been called twice in the past year with = news=20 that a cadaver kidney was available. But, both times, = final=20 testing at the hospital canceled the transplant.=20

A second kidney transplant is a harder match, but = the prior=20 transplant doesn't change his place on the waiting=20 list.

So Goossen waits and hopes. "I get very=20 impatient," he admitted. He's looked at a Web site = offering=20 kidney transplants for $70,000 in China =97 a country = that has=20 allowed use of organs (allegedly donated) from = prisoners=20 executed hours or days after arrest. He's also looked = at a Web=20 site offering to match live donors with recipients for = an=20 administrative fee.=20

Goossen wishes more people would donate organs = after they=20 die and doesn't understand why they don't. "They don't = need=20 them," he says.

CSWINGLE@DemocratandChr= onicle.com=20