Transplant Consortium: Finding Hope in Tragedy

Bobbie Leahey didn’t worry at first when she began feeling sick. She thought the fatigue and nausea were simply nagging flu symptoms. But when she passed out and woke up in the hospital, she realized that she faced a much bigger problem. She had suffered kidney failure, and for four and a half years she required dialysis and life altering strictures on her diet before she got a kidney transplant earlier this year. Today, 60,000 people are in need of kidneys and 25,000 need other organs. Everyday, some 17 people die from not receiving a transplant in time.

This fall Secretary of Health and Human Services Tommy Thompson spearheaded the Organ Donation Breakthrough Collaborative to increase donation rates throughout the United States. In the Washington Metropolitan area, Inova Fairfax Hospital and Washington Hospital Center have joined with the Falls Church-based Washington Regional Transplant Consortium to increase organ donations in the area. The consortium is a non-profit group that organizes the donation process throughout the Washington area. It is one in a network of organizations throughout the country.

Eric Price of the Washington Transplant Consortium said that the waiting list for organs now is thousands of names long and growing quickly. By meeting the national goal set by Secretary Thompson, Price said his consortium could be able to find organs for all the people on the waiting list.

While transplants and organ donation have become a normal part of the country’s lexicon, there are a lot of unknowns and misconceptions surrounding the process. This lack of awareness is part of what has made organ availability a pressing issue. One of the primary obstacles to organ donation is the infrequency of candidates eligible to become donors. Organ donation is only possible when a person dies from brain death; which is a complete cessation of brain function. Only one in 100 people die this way.

By contrast, when a person dies from conventional heart failure, for example, a chain reaction takes place as organs lose blood, arteries constrict and chemicals are released signaling the death. Because of this process, the organs are unusable in transplants. The infrequency of brain death has made the wait for organs last so long and makes securing every eligible organ of the utmost importance. Thompson’s call for increased donation rates challenges donation centers to secure 75% of eligible organs. In the Washington Metropolitan area the transplant consortium has a 66% recovery rate, which is considered one of the highest in the U.S. Nationally, the average is only 44%.

Cindy Speas of the Washington Consortium said that the low occurrence of eligible donors is compounded by difficulties in the recovery process to cause the low rates. One of the biggest of those obstacles is the willingness of the deceased’s family to allow donation. The nature of brain death often makes families unwilling to donate. A person who suffers brain death doesn’t appear to be physically dead. With the use of a respirator and hormones the body still appears to be alive. The chest still rises and falls with the help of the respirator.

Price said that the appearance of life gives the impression that the patient might recover and brain death is often mistaken for a coma. But the two are far different.

In a coma the brain shows activity on an EKG, though complete function is deterred. Often a person is able to recover from a coma after a period of time. But in brain death there is no brain function whatsoever and no possibility for recovery. Price added that there are several myths surrounding donation which hamper the process as well. The most common is that paramedics and hospitals won’t work as hard to save a person who has identified himself as a donor, out of an eagerness to get the organs.

Price said that is entirely false. When a person is admitted to a hospital the primary focus by the medical team is keeping the person alive. In fact it is against the rules to even mention donation to the family of a person until brain death has already occurred, so as to avoid the perception they didn’t work as hard as possible to save the person’s life. Another myth is that the expense of donation will be charged to a donor’s family. Price said that the entire process is actually paid for by the organ recipient’s insurance.

Thirdly, people believe that by becoming a donor a deceased person’s body will be damaged and not fit for a funeral. But the donation process, like an operation on a living person, doesn’t disfigure the body. Finally there is some worry that donation does not correspond to religious doctrine. While there has been a debate on this in the past, today all major religions support and encourage organ donation and transplantation. Even with agreement from a donor’s family the process of recovering organs is difficult. After brain death there is only a 24 hour window in which to remove the organs before they become unrecoverable.

This means an incredible amount of work for the Clinical Recovery Coordinators, whose job it is to facilitate organ donation. Elizabeth Spencer, a coordinator for the Washington Consortium, talked with the News-Press about the job of securing lifesaving organs. When a hospital admits somebody who has suffered an injury that could result in brain death it contacts the consortium to alert them to a possible candidate for donation.

Because a hospital can’t approach a family while a patient is still living, Spencer has to wait until brain death is declared before she can start the donation process. As soon as death occurs the hospital alerts the consortium and they send one of their five coordinators to ascertain eligibility.

After the coordinator identifies the person as an eligible donor, she is faced with two tasks. The first is to keep the body functioning and the second is to talk with the family about donation. Trained as a paramedic, Spencer uses advanced medical technology to keep the organs suffused with blood and to make the body believe it is still alive. She administers hormones that would normally be produced by the brain that control the restriction of blood vessels and chemical deployment throughout the body.

Spencer leads this intense and time sensitive process assisted by a medical team. It’s crucial that she is able to stabilize the condition of the body or the organs won’t be recoverable. In an ideal situation another coordinator is also on hand to help with other details of the process, but in many cases Spencer has had to handle everything on her own. This means that as she has worked to stabilize a donor she has also worked with a family to discuss donation. The transition from the emergency room to the waiting room means a complete change in the environment for Spencer. From the fast paced work of keeping the organs viable, Spencer has to become a sensitive counselor to talk with the family about the option of organ donation. “You have to have a lot of compassion. You never want to neglect a family,” said Spencer.

While some families are interested in donation and know it is something their loved one would want, others are skeptical about the process. For those Spencer works hard to convince them that donation is the right thing. The first thing she does is make sure that they have all the information about donation. She makes sure that they understand what brain death is and how it is different from a coma and lets them know about how important donation can be in the lives of those waiting for an organ. A single donor can provide organs for up to seven people and tissue for over 50.

As she talks with a family Spencer tries to ignore the clock. The longer it takes to transplant an organ the less likely that organ will be recoverable as the body starts shutting down even with medical attention. But if necessary Spencer said she will take all the time she needs. She talked about some people who have initially said “no” and then came back hours later to say that they changed their minds.

It is incredibly emotional work for Spencer as she works with people in one of the most painful moments of their lives. “It’s a very bare, open, connection,” she said. “I carry them around in my heart.” But sometimes the frustration is overwhelming as people refuse to allow donation and Spencer is faced with the fact that the one chance that a recipient could have had has slipped away.

Still the satisfaction that comes when a family agrees to a donation makes it worth it for her. “I can focus them on a glimmer of hope, that something good could come out of the tragedy,” she said. Making that hope become a reality is the next step in the process. As soon as a family agrees to the donation and says their goodbyes, Spencer starts making arrangements for the transplant.

With the help of a nationwide database she goes through the list of candidates and sorts by how long they’ve been waiting, how urgent their need is, and their compatibility with the donor. She then contacts the surgeon who gets in touch with the person in need of the organ. Within hours everyone arrives at the hospital and transplant is arranged. In a 24 hour period, a death has given new life to others in need.

For Bobbie Leahey of Oakton, Virginia her kidney transplant was a miracle that set her free from the restraints of constant dialysis and a restrictive diet. From the time she was diagnosed with kidney failure Leahey’s life changed. She had to restrict her intake of water, avoid salt, dairy, chocolate, and certain fruits. Every week she was required to go to the hospital and have toxins removed from her body through a tube in her arm.

But on Good Friday of this year Leahey received a call from the hospital telling her that she should come to the hospital and prepare for surgery. This was the fourth time that she had been called in; first time she was an alternate, the second time the kidney wasn’t recoverable, the third time it never arrived. But this time things were different. She arrived for the surgery that evening and was immediately prepped for surgery. Over the next 24 hours the kidney was transplanted from the donor into her body and on Easter morning she awoke healthy with a fully functioning kidney. “You feel so good. It was like it used to be,” she said.

While the transplant is a once-in-a-lifetime occurrence for those involved, the transplant consortium remains in communication with both the donor’s family and the recipient. While both sides have signed confidentiality agreements, the consortium sends the donor family basic information about how the organ has helped the recipient and what difference it has made in their life. For Leahey this wasn’t enough to show her appreciation so she sent a letter to the consortium and asked them to forward it to the donor family.

A week later she was contacted by the consortium and asked if she wanted to waive her confidentiality and meet with the donor family. Finally after a couple of weeks she was contacted by the husband of the woman whose kidney was donated upon her death. A nurse, she had helped many while alive and had told her family that she would want to be a donor if the occasion arose. “In that life they’ve given there’s something of their loved one,” she said. The communication of intent the donor had with her family before her death was what made everything go so smoothly. Cindy Speas said that the Washington Consortium’s work has been to increase the awareness about donation and perhaps to get people talking about their feelings about it before it is too late. “If families and loved ones know what a person wants, it makes our job a lot easier,” she said.