Opening Doors and Lives

It was not unusual for the Hadleys, a deeply religious family living in Paducah, Ky., to discuss serious subjects while having dinner. One recent discussion for the Hadley family—- Chuck, Gwen and their three children: Christina, 15; Nicole, 14; and Andrew, 12— was about organ donation. Nicole, who at 5'11" excelled in volleyball and basketball, told her family that she wanted to donate her organs. Little did the Hadleys know how prescient that discussion would prove.

On the morning of Dec. 1, 1997, Nicole, as usual, joined some 35 other students in a prayer group in the lobby of Heath High School. As the group squeezed hands and said, "Amen," three loud pops rang out. Nicole's fellow student, Michael Carneal, had fired a .22-caliber semiautomatic pistol into the group. Carneal fired seven more shots before another student pinned him down.

Nicole and two other students, Kayce Steger, 15, and Jessica James, 17, were fatally wounded. Five others were injured.

Nicole was rushed to Western Baptist Hospital in Paducah and later pronounced dead. The decision for the Hadleys was clear. Gwen wanted to fulfill her daughter's wishes and signed the form granting doctors the permission to remove Nicole's organs, including her heart, liver, kidneys, pancreas and lungs.

"I had a lot of feelings to deal with as we made the decision to donate her organs while Nicole lay dying," Gwen said. "She was on life-support systems from very early in the morning until she was pronounced dead at 10:10 a.m. They came to me and said, 'Your daughter is dead. Those machines are keeping her body warm, and although she is breathing, she is dead.' Our decision to donate her organs was just a reflex because it was something that we had discussed."

Five hours after Nicole died, a call went out to Tommy Hereford Jr., a 42-year-old medical technologist who lives in Jeffer-sonville, Ind., a town across the Ohio River from Louisville, Ky. Stricken with a rare genetic disease, alpha-1 antitrypsin deficiency, which brings on emphysema-like symptoms, Hereford had been struggling for breath for five months as he waited for a set of lungs. While driving to Louisville's Jewish Hospital with his family, Hereford heard about the shooting.

"We all speculated that that was where the lungs would come from," he said. "Most of the time, organs do come from younger people who have died tragically, violently, like Nicole, or in accidents."

It was an unlikely match, the pairing of an adolescent girl's lungs with Hereford, a middle-aged father of two grown children. But the lungs of Nicole, who weighed within a few pounds of Hereford, were a perfect fit. "I now have lungs that are one-third my age," said Hereford, who last summer had to quit his job because he was constantly short of breath. "I now feel great. Even when I first woke up from the surgery, I was able to breathe more fully."

In all, eight of Nicole's organs were surgically implanted in five people, giving them a second chance at life.

While organ donation conjures images of medics rushing ice chests onto helicopters, much of the ground-laying work for donors and recipients is done behind the scenes by a computer system called the Organ Procurement and Transplantation Network (OPTN). This network is run 24 hours a day, 365 days a year by Richmond, Va.-based United Network for Organ Sharing (UNOS) under a contract with the Department of Health and Human Services.

OPTN links 460 organizations specializing in organ transplantation— with 1,500 users nationwide— to a central database in Richmond that matches donors and potential recipients. OPTN is 11 years old and, along with a companion database that tracks the outcome of transplants, costs $5.5 million annually to run.

Every year OPTN finds matches for 20,000 organs such as those donated by Nicole Hadley. To find a match, doctors send in the donor's blood type, the size of the organ and other medical information to one of the transplant organizations. From there, the information is forwarded to the OPTN database, which lists similar information on 55,000 potential recipients.

Using complicated algorithms, OPTN ranks recipients using calculations based on several criteria set by UNOS and the organ allocation community, including blood type, length of time on the waiting list, medical urgency and distance from the donor.

Potential recipients are listed in order, with local recipients first, then regional and then national. Once a match has been made, an UNOS staff member, such as Jerry Creger, special projects administrator at the UNOS center, makes a call to the organ transplant organization in the area with the patient information. UNOS gives that organization one hour to respond; then they move down the list.

Not all OPTN's matches are as free of controversy as the Hadley/Hereford match. Questions of favorable treatment were raised in June 1995 when OPTN ranked at the top of one of its lists baseball legend Mickey Mantle, who was told he would die if he did not receive a new liver. And when actor Larry Hagman, star of the popular 1980s TV show "Dallas," received a liver transplant the same year, organ transplantation groups and the federal government were criticized for giving preferential treatment to wealthy celebrities.

Shortly after Hagman received his transplant, People magazine published as its Oct. 23, 1995, cover story Hagman's autobiographical account of his surgery. In response, a reader angrily wrote to the magazine: "Two people had to die before Larry Hagman could get a transplant— the person who donated the liver and the person who was next in line. Money talks!"

Jon Nelson, director of HHS' Office of Special Programs, which includes the Division of Transplantation, which is the government liaison to UNOS, said his office frequently receives such criticism. "A celebrity receives an organ, and people want to know how and why that occurred," he said. "We try to tell them that there is no way to get around the computer code." Nelson added that because 20,000 organs are matched through the system every year, some of the recipients end up being famous people.

UNOS insists that only the medical data entered into OPTN gave a second chance at life to Hagman, whose advanced stage of cirrhosis— partly brought on by heavy drinking — gave him less than two months to live. "They sent a helicopter for me after I had been on the waiting list for 36 days," Hagman said. "When I woke up after having been on that operating table for about 24 to 26 hours, I had seen a glimpse of the other side." Six months after surgery, Hagman appeared in two films. "I am now healthy as a horse," he said.

One reason OPTN's matches can be controversial is that the system automates a decision-making process that is inherently difficult. For example, the organ transplant community is debating whether recipients should be ranked nationally instead of regionally.

Responsibility for those kinds of allocation decisions lies with UNOS committees that are made up of doctors, patients and other stakeholders in the process.

"We are making policy decisions here that literally are of life-and-death importance," said Walter Graham, UNOS' executive director. "The fundamental problem is that there are far more people waiting for organs than there are organs available. One of the big controversies right now is that the system gives local priority, and there is an acute shortage of organs all over the country."

Under the current system, Gabrielle Friedly might not have received her liver and kidney transplants 13 years ago and become the first patient to survive that double operation. At 15, Friedly suffered from polycystic kidney disease, which invades the walls of the kidneys and liver, eventually destroying those organs. The disease killed her 10-year-old sister. Friedly, who lived in Menlo Park, Calif., received a liver and kidneys from a 12-year-old boy who lived and died in Tennessee, half a country away.

"When I had my transplant, there were more organs than patients, and [transplantation] wasn't nearly as successful as it is now," said Friedly, who once had two weeks to live and now plans to run the Boston Marathon this spring.

"If organs are now only being shared regionally, not everyone in the United States is given a chance. UNOS is using a modeling system to find some way to sort things out and make it a fair decision, but it is just impossible. I was in and out of a coma at the time. I'd hate to think I would have been passed up," Friedly said.

Transplant surgeon John Rabkin is stridently opposed to nationalizing organ allocation policies. He cites several recent modeling programs that projected outcomes based on specified changes in UNOS policy. "The end result is that no [allocation] system that anybody could propose had better outcomes than the current system," said Rabkin, who is chief of liver transplantation at the University of Oregon Health Sciences University in Portland and who has performed about 450 transplants.

Rabkin said political and financial factors are beginning to encroach on the organ allocation policy-making process. "There are a lot less organs than people who need them," he said. "There are lives on the line, and financially, this has turned into big business."

On average, organ transplants cost $350,000— a price that can cost someone like Sam Teague everything he owns. Teague, whom doctors have told has two to three years to live because of a diseased liver, has been waiting for more than two years for a liver transplant. While living in Nevada, Teague could not find private insurance to cover his transplant.

"We had to impoverish ourselves and live like paupers for years" to raise the money to pay for an operation, he said. Teague, who now lives in California, has Medicaid and state coverage for the operation and is No. 6 on the waiting list. He carries a beeper in anticipation of his call.

To give someone another chance at life is one of the rare joys a family can take in the course of a tragedy, according to Janet Mart, a donor's mother and the Organ Procure-ment Organization's counselor to Gwen Hadley. The OPO evaluates potential donors, discusses donations with family members and arranges for the surgical removal of donated organs.

"Five years ago, my son was killed. It was the most horrible, negative thing that can ever be presented to a human being," Mart said.

But Mart has found comfort in a letter she received from one of the recipients of her son's organs. "Having that letter literally gave me a reason to get up in the morning. In my case, donating his organs made things not quite as final. It in some way allows you a softer approach. It allows you to digest the tragedy in smaller pieces."

* * * * *

UNOS Components

Hardware: Windows NT servers, a Digital Equipment Corp. Alpha cluster, a Cabletron Systems Inc. MMAC Plus Ethernet switch, a Raptor firewall and a Cisco Systems Inc. router

Software: Lotus Development Corp. Notes, Open VMS, IBM Corp. OS/2

Communications: AT&T Interspan service


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