Medical Matchmaker

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, w

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

X
This website uses cookies to enhance user experience and to analyze performance and traffic on our website. We also share information about your use of our site with our social media, advertising and analytics partners. Learn More / Do Not Sell My Personal Information
Accept Cookies
X
Cookie Preferences Cookie List

Do Not Sell My Personal Information

When you visit our website, we store cookies on your browser to collect information. The information collected might relate to you, your preferences or your device, and is mostly used to make the site work as you expect it to and to provide a more personalized web experience. However, you can choose not to allow certain types of cookies, which may impact your experience of the site and the services we are able to offer. Click on the different category headings to find out more and change our default settings according to your preference. You cannot opt-out of our First Party Strictly Necessary Cookies as they are deployed in order to ensure the proper functioning of our website (such as prompting the cookie banner and remembering your settings, to log into your account, to redirect you when you log out, etc.). For more information about the First and Third Party Cookies used please follow this link.

Allow All Cookies

Manage Consent Preferences

Strictly Necessary Cookies - Always Active

We do not allow you to opt-out of our certain cookies, as they are necessary to ensure the proper functioning of our website (such as prompting our cookie banner and remembering your privacy choices) and/or to monitor site performance. These cookies are not used in a way that constitutes a “sale” of your data under the CCPA. You can set your browser to block or alert you about these cookies, but some parts of the site will not work as intended if you do so. You can usually find these settings in the Options or Preferences menu of your browser. Visit www.allaboutcookies.org to learn more.

Sale of Personal Data, Targeting & Social Media Cookies

Under the California Consumer Privacy Act, you have the right to opt-out of the sale of your personal information to third parties. These cookies collect information for analytics and to personalize your experience with targeted ads. You may exercise your right to opt out of the sale of personal information by using this toggle switch. If you opt out we will not be able to offer you personalised ads and will not hand over your personal information to any third parties. Additionally, you may contact our legal department for further clarification about your rights as a California consumer by using this Exercise My Rights link

If you have enabled privacy controls on your browser (such as a plugin), we have to take that as a valid request to opt-out. Therefore we would not be able to track your activity through the web. This may affect our ability to personalize ads according to your preferences.

Targeting cookies may be set through our site by our advertising partners. They may be used by those companies to build a profile of your interests and show you relevant adverts on other sites. They do not store directly personal information, but are based on uniquely identifying your browser and internet device. If you do not allow these cookies, you will experience less targeted advertising.

Social media cookies are set by a range of social media services that we have added to the site to enable you to share our content with your friends and networks. They are capable of tracking your browser across other sites and building up a profile of your interests. This may impact the content and messages you see on other websites you visit. If you do not allow these cookies you may not be able to use or see these sharing tools.

If you want to opt out of all of our lead reports and lists, please submit a privacy request at our Do Not Sell page.

Save Settings
Cookie Preferences Cookie List

Cookie List

A cookie is a small piece of data (text file) that a website – when visited by a user – asks your browser to store on your device in order to remember information about you, such as your language preference or login information. Those cookies are set by us and called first-party cookies. We also use third-party cookies – which are cookies from a domain different than the domain of the website you are visiting – for our advertising and marketing efforts. More specifically, we use cookies and other tracking technologies for the following purposes:

Strictly Necessary Cookies

We do not allow you to opt-out of our certain cookies, as they are necessary to ensure the proper functioning of our website (such as prompting our cookie banner and remembering your privacy choices) and/or to monitor site performance. These cookies are not used in a way that constitutes a “sale” of your data under the CCPA. You can set your browser to block or alert you about these cookies, but some parts of the site will not work as intended if you do so. You can usually find these settings in the Options or Preferences menu of your browser. Visit www.allaboutcookies.org to learn more.

Functional Cookies

We do not allow you to opt-out of our certain cookies, as they are necessary to ensure the proper functioning of our website (such as prompting our cookie banner and remembering your privacy choices) and/or to monitor site performance. These cookies are not used in a way that constitutes a “sale” of your data under the CCPA. You can set your browser to block or alert you about these cookies, but some parts of the site will not work as intended if you do so. You can usually find these settings in the Options or Preferences menu of your browser. Visit www.allaboutcookies.org to learn more.

Performance Cookies

We do not allow you to opt-out of our certain cookies, as they are necessary to ensure the proper functioning of our website (such as prompting our cookie banner and remembering your privacy choices) and/or to monitor site performance. These cookies are not used in a way that constitutes a “sale” of your data under the CCPA. You can set your browser to block or alert you about these cookies, but some parts of the site will not work as intended if you do so. You can usually find these settings in the Options or Preferences menu of your browser. Visit www.allaboutcookies.org to learn more.

Sale of Personal Data

We also use cookies to personalize your experience on our websites, including by determining the most relevant content and advertisements to show you, and to monitor site traffic and performance, so that we may improve our websites and your experience. You may opt out of our use of such cookies (and the associated “sale” of your Personal Information) by using this toggle switch. You will still see some advertising, regardless of your selection. Because we do not track you across different devices, browsers and GEMG properties, your selection will take effect only on this browser, this device and this website.

Social Media Cookies

We also use cookies to personalize your experience on our websites, including by determining the most relevant content and advertisements to show you, and to monitor site traffic and performance, so that we may improve our websites and your experience. You may opt out of our use of such cookies (and the associated “sale” of your Personal Information) by using this toggle switch. You will still see some advertising, regardless of your selection. Because we do not track you across different devices, browsers and GEMG properties, your selection will take effect only on this browser, this device and this website.

Targeting Cookies

We also use cookies to personalize your experience on our websites, including by determining the most relevant content and advertisements to show you, and to monitor site traffic and performance, so that we may improve our websites and your experience. You may opt out of our use of such cookies (and the associated “sale” of your Personal Information) by using this toggle switch. You will still see some advertising, regardless of your selection. Because we do not track you across different devices, browsers and GEMG properties, your selection will take effect only on this browser, this device and this website.