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Source: Janet Basu
415-476-2557
01 April 2002
Waiting for a liver transplant: living donors help ease the organ shortage, but for many, the wait is agonizing
The number of patients who received a new liver jumped 30 percent last year at UCSF Medical Center, one of the nation’s leading centers for liver, kidney and pancreas transplants. The increase was mostly thanks to 23 healthy people who came forth to donate part of their livers to a family member or friend.
Meanwhile, 1,347 people died in the U.S. last year waiting for liver transplants. A new national system to prioritize patients waiting for liver transplant began phasing in on February 27. It means that some people will experience shorter waits and some will wait longer, based on laboratory tests aimed to identify those with the most acute need.
Those two sets of facts lie beneath the two love stories that occur every day at transplant centers like UCSF. In one love story, a woman ignores advice from her husband’s doctor, who told them to prepare for his early death from hepatitis. They travel to UCSF Medical Center, where she shows the surgeons a stack of articles she has downloaded about living donor transplant. “Do you do this operation?” she asks. “Because I want to donate.”
In the second love story, one family worries and watches as the symptoms of a mother’s failing liver grow worse. Another family grieves after a sudden loss, and decides to give the gift of life through their son’s donated organs. At UCSF Medical Center, the liver transplant coordinators get the word to make a long-awaited call to the first eligible recipient on the waiting list.
These two stories always are intertwined, said John Roberts, MD, UCSF professor of surgery and chief of transplant at UCSF Medical Center. Every successful living donor transplant means one less person who must wait for a cadaver donor. However, since the number of people on UCSF’s waiting list grows each year, and there is little increase in the number of families in Northern California who agree to donate a dying person’s organs, patients still die while waiting for a liver.
Living liver transplants began with children like Damia, whose young mother gave her the small lobe of her liver a few months after the baby’s birth. The liver is the only solid organ that regenerates inside the body, so both parts of the mother’s liver grew to the appropriate size in donor and recipient. Of UCSF’s 1300 liver transplants, more than 85 have been living-donor operations, and until the year 2000, all of these were given to children.
In 2001, twenty-one of the living-donor livers went to adults. At the annual UCSF liver transplant reunion this February, a special tribute to living donors told the stories of wives and husbands, daughters and sons, brothers and sisters who each gave 40 to 60 percent of their livers to save the life of someone they loved. Two sisters carried the Olympic torch only six weeks after their transplant. Bill Avery came to UCSF two months before his wedding to donate to his father -- and both were well enough on the wedding day to walk down the aisle together and wait for the bride. Teacher Veronica Garay was able to watch her mother return to her own teaching career after their transplant restored her energy and health. “It was like getting our mother back,” said Garay.
Transplant programs must be cautious about any donor’s health, according to Roberts, but for liver transplants the screening is particularly stringent to make sure that the donor is well enough to withstand surgery and recover without complications. Since adult-to-adult liver operations were introduced in the U.S., two donors have died -- an added reason for caution in every aspect of screening and treatment for these patients. “This is a quandary for transplant surgeons,” Roberts said. “Our ethic as doctors tells us we must not harm a healthy person. Yet we have patients who may die waiting for a transplant and relatives who want to donate to save this person’s life.”
Roberts predicts that living-liver donation will continue to account for a large percentage of the transplants in centers with the facilities to offer such transplants. However, because the donor must be in such excellent health, he says a majority of adults with end-stage liver disease will not be able to find living donors. Most must wait for a cadaveric donor.
Waiting for Transplant: changing the nature of the waiting list For a patient on the waiting list for a cadaveric donor, the UCSF liver transplant coordinators often are the first introduction to the transplant team of doctors, nurses, social workers and staff who will work to care for the patient before, during and after transplant -- through what all hope will be many more healthy years. The transplant coordinators are clinical nurse specialists who help guide patients through the schedule of medical tests, insurance matters and other details needed to prepare for a transplant. In the process, they are witnesses to hundreds of family love stories each year, as spouses and parents and friends strive to keep their hopes up and UCSF’s hepatologists (liver doctors) try to keep the patient’s liver working until the right transplant match can be found.
The transplant coordinators now are helping patients and their families through a transition to a new system to allocate livers that changes the nature of the waiting list. The MELD (Model for End-Stage Liver Disease) system, introduced on February 27, was developed by the United Network for Organ Sharing. It scores patients on the basis of laboratory tests that help doctors to calculate how urgently the person needs a new liver within the next three months; the score may go up or down depending on the status of the person’s liver disease. Under this system, the amount of time a person has waited for transplant is less important than the acuteness of his or her need.
The MELD system and its pediatric version, dubbed PELD, are designed to offer transplants first to the acutely ill and next to patients who may become acutely ill soon -- before they become too sick to benefit from a transplant. The hope is that fewer people will die waiting for a donated organ. However, Roberts cautions that because end-stage liver disease is unpredictable, no scoring system can measure acute need perfectly.
UCSF’s transplant coordinators say that MELD will relieve anxieties and lead to quicker transplants for some categories of their patients. For others, the waiting time will be extended, and anxieties may increase.
Unfortunately MELD does not solve a problem that has long concerned Roberts: in some regions like Northern California, there are many more people waiting for transplant than there are available organs. In other regions, waiting lists are shorter. Yet even with a uniform scoring system, so far there is no provision to share organs donated in one region with transplant centers in a nearby region, even if more of the patients there are acutely ill.
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NOTE TO REPORTERS: Living donor transplant surgery is visually dramatic because of the relationship between donor and recipient. Dramatic moments in the operating room include the handoff of a portion of the liver from the donor’s surgeon to the recipient’s surgeon. In many circumstances, permission can be granted to film these parts of surgery.
Interviews can be arranged with patients who are planning or already have received living-donor liver transplants, as well as with their doctors and other caregivers.
Interviews can be arranged with patients who have survived the long wait for a cadaveric donation and now have a transplanted liver.
UCSF’s transplant doctors and transplant coordinators also can discuss the toll that this anxious wait places on patients and their families. As the MELD organ allocation system phases in over the next six months, they can discuss how this wait reduces anxiety for some -- and raises anxiety for others.
