The Modern Meaning of Death And Why the Brain Is at the Head of It
By Guy McKhann - Washington Post, October 25, 1998
This article is a simply stated history on how the definition of brain death which is used daily in transplantation came about. Anyone who is promoting organ donation should have these facts at hand. Ed.
Natural and inevitable though it may be, death frequently confounds us. All too often, dying seems like a mysterious process fraught with difficult decisions, like the highly publicized dilemma Michele Finn faced after she decided to have her severely brain-damaged husband' s feeding tube withdrawn, allowing him to die in a Virginia nursing home two weeks ago.
So complex and painful are the medical and ethical questions surrounding such an event that it is easy to overlook the fact that, until recently, we had a single, straightforward medical understanding of death: We accepted that people died when their hearts stopped beating and they stopped breathing. Those are the signs of life that paramedics are still trained to look for when they first assess an accident or heart-attack victim, and it is the absence of these signs that doctors still use to pronounce death about 90 percent of the time in hospitals today. Over the past 30 years, though, medical advances have undermined this simple understanding and forced physicians to look beyond the heart for an additional means of defining the end of life.
Now that doctors are able to sustain a patient's heartbeat mechanically or replace a damaged heart with a new one, we have turned to the failure of another organ, the brain to describe death.
Although widely accepted in medical practice, the concept of brain death has spawned a host of medical, legal, ethical and philosophical debates, and recently has come under attack by groups as disparate as the religious right in the United States and the left-leaning Green Party in Germany. Some say that defining death should not be left to physicians, that the death of a brain is not the same as the death of a person; others resist any definition of death that is inherently based on science and technology.
My involvement with these questions began some 30 years ago when, shortly after Christian Barnard's pioneering surgery in South Africa in 1967, Norman Shumway of Stanford University performed the first human heart transplants in the United States. As a neurologist at Stanford Medical School, I was invited, along with other physicians, clergy and members of the community, to help develop new criteria for defining death the initial thinking behind the state laws recognizing brain death that came into effect in the late '60s.
I have maintained this interest as a practicing neurologist at Johns Hopkins Hospital and, most recently, as one of a small committee of advisers to the Vatican. This committee, consisting of physicians, philosophers and theologians, still wrestles with many of the same biological and ethical issues that were raised by Barnard's work three decades ago. No doubt we shall continue to; the ethical and theological ramifications of these decisions are complex, and only become more so as our ability to keep people alive becomes more sophisticated.
Thirty years ago, when we first met at Stanford to grapple with this question, we were only too aware of how developing medical technology was changing our understanding of what it means to die. The first challenge had come in the late '50s with the advent of life-support machines that could keep the heart beating or even bypass it. According to the traditional way of thinking about death, patients who are sustained by this machinery are still alive, their hearts still pump blood through their bodies but they may have suffered irreversible brain damage, which means they will never again be aware of their surroundings, recognize or respond to their loved ones, or have any thoughts or emotions.
There is a second challenge arising from this century's medical and technological advances. A dying person may be a potential donor of vital organs such as the heart or lungs. If a surgeon operates quickly enough, a heart that has stopped irreversibly in one body can be removed and transplanted into another, where it can return to normal functioning possibly for many years. Cessation of heartbeat, then, is not a satisfactory criterion for death.
If the irreversible loss of heart function can no longer determine a person's death, could failure of another organ do so? What about the liver or kidneys, for example? A patient will quickly die if either of these organs fail. There is a hitch to this line of thinking, though: Like the heart, both the liver and the kidneys can be replaced with transplanted organs, and kidney failure can also be overcome mechanically, by dialysis.
When we confronted these questions at Stanford, the brain seemed to us to be the obvious candidate as it still is. It cannot be transplanted or replaced by any machine; without a functioning brain, people cannot breathe or maintain their blood pressure; they also lose the traits that we commonly associate with humanness, such as their ability to communicate, as well as any awareness of their surroundings.
It's important not to oversimplify, though. Brain damage is not an all-or-nothing state. It ranges from patients who lie almost immobile but can still respond (perhaps by opening their eyes), to those who are totally unresponsive and unable to breathe and whose hearts no longer beat. Physicians distinguish between these states by testing for any response to light, sound and pain, for any signs of willful movement, and finally for evidence that a patient can breathe without the help of machinery.
As a neurologist, I am repeatedly faced with two contrasting situations. Walk into the intensive care unit of any hospital and you may well find a patient who has suffered severe brain damage often following a stroke, in which a clot has obstructed blood flow (and therefore limited the oxygen supply) to the brain, or a heart attack during which the heart has stopped for a matter of minutes, preventing the brain from getting enough blood. The brain of a patient like this may be able to support vital functions like breathing or keeping the heart pumping, but otherwise it is wrecked.
A patient can remain in this state for months or even years. But at some point in the course of his or her care, the family and the physicians often ask: "Would this person really want to be maintained in this state?" Should supportive measures, such as feeding and treating infections, be continued when the outcome is hopeless? Those are the very questions that Hugh Finn's family recently faced. And I remember all too well the terrible bind I felt caught in about five years ago when the wife of a severely brain-damaged colleague maintained that he would not want to survive, while his mother insisted that we do everything we could to keep him alive. A living will can at least help to clarify the patient's own wishes. (This is not the place to discuss the ethical questions and legal cases that have arisen from such decisions, but it is worth noting that there is general although not universal acceptance, in state law as well as from the Pope, that when continuing support is futile it can be withdrawn.)
Contrast to this, though, the situation in which the brain has stopped working altogether, and the person is maintained solely by machines. The distinction between these two conditions is important: Withdrawing life support in a hopelessly brain-damaged person, as in the first example, will result in brain death, but that person is not actually brain dead at the time the decision is made; in the second example, the patient is already brain dead.
The importance of this distinction is evident not only for doctors treating brain-damaged patients and for families who need to understand their loved one's condition, but also in the question of supplying organs for transplant patients. Since transplantation techniques were first developed, it has been clear there would be more potential recipients than donors. That was particularly true back in the 1960s and '70s when much less was known about immunology, and patients would often reject a recently transplanted organ and need another one. Under these circumstances, the pressure on physicians to bend the rules and accept as a donor a patient who has irreversible brain damage but is not brain dead is enormous.
Shortly after one of the first heart transplant patients at Stanford began to reject his heart, a young man the son of one of my neighbors drove his motorcycle into the side of a bridge and suffered massive head injuries. He would clearly never recover, but was he brain dead? If so, could he be a donor? It was the epitome of a test case, and some tried to rush the decision, until it became moot when the motorcyclist's heart turned out not to be an acceptable match.
The position that we established at Stanford and adhere to at Hopkins today is clear: The primary responsibility of the potential donor's medical team is proper care of that patient (and the patient's family). Until a patient is declared brain dead, absolutely no measures should be taken to preserve organs for donation, even if the patient has declared his or her wishes to donate organs or carries a donor card. Without clear criteria for brain death, the basis for deciding to stop life-support measures and whether it is appropriate to remove organs for transplant would be vague, variable and subjective.
In clarifying the definition of brain death, we rely on an understanding of three basic kinds of brain function:
- Higher-brain functions, which confer our properties of humanness, such as communication, our awareness of our environment and our response to it.
- Brain-stem functions, which support the processes of breathing and maintaining blood pressure.
- Whole-brain functions, which require both higher-brain functions and brainstem functions, as well as the ability to integrate what we see and hear with how we move and respond.
Although each state has phrased it a little differently, the definition of brain death is generally based on whole-brain functions. Maryland's position, for example, is that brain death is the irreversible cessation of functions of the brain involved with the integrated actions required for the support of breathing, circulation and higher brain functions such as alertness, attention, verbal and nonverbal communication, awareness of one's environment, and response to the environment.
End-of-life issues will always be with us. They are particularly poignant when it comes to decisions about terminating life support. I have found, though, that when I talk with family members, some of whom may need reassurance that everything possible is being done to save their relative, my ability to state clearly that the patient meets the clinical criteria for brain death brings them some comfort.
Over the 30 years that the concept of brain death has been used, there have been further remarkable advances in both the mechanical and the biological replacement of organs, organ systems, cells and now even parts of cells. The brain, however, has so far resisted these advances. If, at some time, the brain can be replaced, as the heart now routinely is, then the concept of brain death will, in turn, have to be reconsidered. Until then, though, we need not only to accept and use a consistent definition of death but to examine it continually to see how it might need to evolve.
Guy McKhann is director of the Zanvyl Krieger Mind/Brain Institute at Johns Hopkins University. This article has been adapted from a version that appeared recently in the journal Cerebrum.
WSJ: Fight Gets Tougher For Organ-AIIocation Reform
By Laurie McGinley - Staff Reporter of The Wall Street Journal 11/28/98
PITTSBURGH -- On the day Rep. Robert Livingston was nominated as House speaker, John Fung sat in his office here looking glum.
"Good for him," he said grumpily.
Dr. Fung, who is the chief of transplant surgery at the University of Pittsburgh Medical Center, and the Louisiana Republican have emerged as bitter foes in the emotionally charged debate over how to distribute scarce organs to patients who need transplants. And Rep. Livingston keeps winning.
Just last month, Mr. Livingston, as House Appropriations Committee chairman, blocked for at least a year new Clinton administration rules designed to fundamentally alter the organ-allocation system. The rules, strongly supported by Dr. Fung, would have steered more organs to sicker patients; currently, patients living close to donors get preference. Rep. Livingston and his allies argued that while big centers such as Dr. Fung's would have been helped by the new rules, smaller ones, including those in Louisiana, would have been badly hurt.
The dispute underscores an underlying issue that isn't resolved by the delay of the rules: Too many transplant centers are chasing too few organs, resulting in a kind of organ protectionism. Currently, more than 62,000 people are on waiting lists for livers, hearts, kidneys and other organs, and 4,000 people are dying every year while awaiting transplants.
Now, with Rep. Livingston poised to become even more powerful, Dr. Fung has given up hope that a sweeping overhaul will occur anytime soon. "All we're going to get is delay, delay, delay," he says. "He [Mr. Livingston] was unfortunately swayed by his constituents, who have an interest in keeping the status quo."
Mr. Livingston and his supporters make no apologies.
John McDonald, chairman of the surgery department at the Louisiana State University Medical Center in Shreveport, is one of those who worked closely with the congressman to derail the Health and Human Services Department rules. The current geographically based system, he says, is better than a more nationally based one, because it encourages local organ-donation ef- forts and makes transplants accessible to poor people who can't travel to megacenters such as Pittsburgh.
Mark Carollo, Mr. Livingston's spokesman, agrees. "People from all over the country said they'd be left high and dry without these smaller centers," he says.
A number of states, including Louisiana and Wisconsin, have passed laws saying that organs donated in the state can't be transported outside the state unless there are no takers within the state. The situation appalls Dr. Fung. "To allow state laws to further fragment what should be a national system will only result in more geographic disparities in waiting times," he says. Such laws, he says, "serve transplant centers, not patients."
Dr. Fung says there is no evidence that the Health and Human Services changes would result in closures of smaller transplant programs. But he adds that it might not be such a bad thing if some small centers close, especially low-volume centers with lower survival rates.
The dogfight this year was set off by HHS rules that were issued in April. The regulations aimed at compelling the United Network for Organ Sharing, the Richmond-based federal contractor for the organ-transplant-and-allocation system, to develop new policies to play down geographic favoritism and emphasize medical urgency. Such changes are needed to curb grossly unfair regional disparities in waiting times, HHS Secretary Donna Shalala argued. She noted that patients in one part of the country may wait as much as five times longer than patients in other parts with similar medical conditions. The new rules, supporters contend, would save 300 lives a year.
But the issue soon degenerated into a fusillade of charges and counter charges. Small centers accused the big centers of trying to stage an organ grab; big centers countered that smaller programs were callous about patients at bigger programs who were dying.
After Rep. Livingston derailed the rules for now, Charles Fiske, a founder of the National Transplant Action Committee, a patient group based in Portland, Ore., and allied with the Pittsburgh center, delivered big bouquets of flowers to the offices of GOP leaders, including Mr. Livingston. The flowers, he told staffers, symbolized the people who would die because of the congressionally ordered delay in issuing the transplant rules. "I walked into Livingston's office with a big bouquet of flowers and said, 'Just don't bother watering them; they'll be dead in a few weeks.' They weren't too thrilled."
Rep. Livingston disputes that the delay will cost lives, saying that the rules themselves would threaten patients by discouraging donations. "Distributing organs from a national list and in more-centralized locations jeopardizes the health of the organ and diminishes the incentive for people to donate in the first place," he said in a letter to his congressional colleagues last month.
In any case, faced by Rep. Livingston's implacable opposition, HHS is striking a more conciliatory tone, trying to find ways to make the regulations more palatable. Officials emphasize they aren't trying to dictate organ-allocation policies to the United Network for Organ Sharing, which staunchly opposed the rules, but are trying to get UNOS to develop new ways to reduce the geographic disparities.
"We have to work with Congress and the transplant community to resolve issues on this rule," says Claude Earl Fox, administrator of Health Resources and Services Administration, the HHS office that handles organ allocation. Referring to Mr. Livingston, the administrator says, "The speaker is inundated right now, but we want to get together with him and his staff to continue the dialog on this."
William Pfaff, president of UNOS and professor of surgery emeritus at the University of Florida in Gainsville, suggests that a mediator work to try to resolve the differences between HHS and UNOS. "I think using a facilitator would make sense," he says.
In the meantime, Congress did authorize HHS to move ahead with part of its rules that would require UNOS and its transplant-center members to provide patients with more-timely information on such important issues as survival data. And it has ordered the respected Institute of Medicine, which is part of the National Academy of Sciences, to study the issue and report back by May.
Both sides are confident their position will be endorsed by the study. "If you can get care 100 miles away from your home, that's better than 1,000 miles away," says Dr. McDonald. "That's obvious."
But Dr. Fung says he's sure the institute will back him up. "It will be clear to them that the system isn't working," he says, adding that the bigger question is how Congress -- and Rep. Livingston -- would react to such a report. "If they just ignore it, well, that's a real abuse of political power," he says.
Some key facts about the U.S. organ shortage:
--There are 62,000 people currently on waiting lists for transplants.
-- Eleven people die each day awaiting transplants.
-- Organs are donated annually from about 5,500 cadavers.
-- Waiting times vary sharply across regions.
-- Currently, organs are offered first locally, then regionally, then nationally.
-- African Americans wait far longer than white recipients for kidney transplants.
Source: U.S. Department of Health and Human Services
Something dawned on me the other evening as I was forcing down dinner (well that's about it with no saliva!) and watching the evening news on television. A new drug concept was being announced that would revolutionize the transplant medical protocol. I can't remember what it was, but as I listened I had a mental flash, something that usually represents nothing more than another"black hole" in this well worn mind. But anyway, I realized that I and many others have now been a part of the transplant scene for ten years with some of us pushing twenty. I would guess that conservatively within that period we have heard at least 6 times per year "this newly announced drug will advance transplantation and should be available for use in 3 years"; "this new laser perforation procedure looks really promising for CAD sufferers especially heart transplant recipients and should be in widespread use within a year and a half'; "the ability to 'pre-immunize' a patient from a transplanted organ should be refined by the year 1994." And most recently here in 1998, "Within five years it should be possible to grow specific immuno-negative organs for transplant, and in a sense have them ready on the shelf." Based on the observable track record of other 'new miracles', please feel free to try like the dickens, but I don't think so Tim.
What gives?!! I'm still sitting here at 11 years out still taking my twice daily Sandimmune (yes, Sandimmune, if it ain't broke ....... ) and my prednisone, because I'm now "addicted". Because of active cancer I am off Imuran, but that was an after the fact action.
I'm confused. This whole transplant endeavor, according to presumed reliable announcements made for broad public consumption, was supposed to advance scientifically by quantum jumps in the last two decades especially after widespread use of cyclosporine began. Instead the way I see it, we have an even worse shortage of donors than we ever had simply because the process itself has been recognized as the best alternative to any other therapy, thus rendering more and more patients not only qualified for transplant, but willing to do so. And we still argue rather vehemently and draw up page after page of rules as to the absolute fairest way to distribute the organs that we do obtain. Yet the protocol, itself, with a few refinements, is now arguably over twenty years old and from this patient's view, quite stagnant.
Now having said the above with rather broad brash generalities, it would be interesting to actually do a bit of research on the"scratched at post" developments in the transplant field. To that end, perhaps I can find time to review the back issues of that renowned journal of transplant industry advancement, UpBeat, and see if we can get a list of horses still in the race and those long gone to the glue factory.
Gosh, continuing in a negative vain (1st death, 2nd no progress), isn't it a crying shame about the Organ Donor Stamp issued last August? Here it really just came into being after a straggle of literally years, and now on Sunday the 10th of January it will take an extra penny to use it. One story says the USPO will start collecting those yet unsold and shredding them for pulp. Another says they will be available from the USPO Philatic Center for a reasonable period of time. From the vibes, not many that I can pick up, the breast cancer stamp will be carried over, but it's the end of the Organ Donation stamp.
But, who knows, it seems it was probably last minute heavy weight pressure that finally brought the stamp to issue in the first place, maybe that same source of energy can be used to extend the Organ Donation stamp's life.
My oh my, what a terrible, but useful pun !
Group Seeks Ban On Animal-To-Human Transplants
By Tony Munroe
BOSTON (Reuters 12/10/98) - Warning that animal-to-human transplants could trigger a "new infectious Chernobyl," a health advocacy group Thursday said it filed a petition with the U.S. government calling for a ban on the practice. The Boston-based Campaign for Responsible Transplantation criticized the U.S. Department of Health and Human Services for promoting xenotransplantation, the practice of animalto-human organ transplants.
"The entire human population on this planet is put at risk by this type of procedure," Emanuel Goldman, a professor of microbiology and molecular genetics at the New Jersey Medical School, said at a press conference calling for the ban.
The worst nuclear accident in history took place at the Chernobyl reactor in Ukraine in 1986. Farm produce in much of Eastern and Western Europe was irradiated and there were 25,000 early deaths from cancer.
HHS has 180 days to respond to the group' s petition.
"Viruses that inhabit animals," Goldman said, "will gain entry into the human population which is not ordinarily available to them."
He said pig DNA has been found to contain endogenous retroviruses that can infect human cells in tissue culture. Pigs and baboons are the two animals most utilized in xenotransplantation.
Critics of xenotransplants pointed to AIDS and swine flu as evidence that diseases can jump species and wreak havoc on the human population.
Goldman said it would be "almost impossible" to breed totally virus-free animals for transplants, "because it is almost certain that we do not even know all of the viruses there are which would need to be eliminated."
The critics also said such transplants are extremely expensive, needlessly cruel to animals, and do not work.
Dr. Jerry Vlasak, a trauma surgeon at Loma Linda University Medical Center in California, said not one of the 60-plus whole-organ animalto-human transplants performed to date has succeeded.
A spokesman for the National Institutes of Health, an arm of HHS, said the department had not yet seen the petition.
"Xenotransplantation is a very complex issue that has gotten and is continuing to get very close study at the Department of Health and Human Services," he said.
Advocates of xenotransplantation, in Boston for a conference on the subject, accused CRT of alarmism and noted that the supply of human donor organs doesn't come close to meeting demand.
"That's ridiculous," said Dr. Jeffrey Platt, a transplant immunologist at the Mayo Clinic in Rochester, Minn. 'Where's no way you can find out whether there are risks at all unless you undertake studies."
"Probably more important," Pratt said, "you have people who come into intimate contact with animals on farms, in slaughterhouses... There is no evidence a transplant is going to transmit some infectious disease that isn't going to get into people by some other means."
CRT accused HHS of violating the Public Health Service Act by issue voluntary rules governing such transplants and ignoring scientific evidence showing the practice to be "dangerous and ineffective."
The group also said HHS violated the National Environmental Policy Act by failing to take into account "the possibility of a deadly new animal virus" that could result from animal-tohuman transplants.
CRT also criticized HHS for allocating "millions" of dollars toward the technique without considering the safety or effectiveness of the practice, or its social, ethical and legal implications.
Hand Transplant May Just be the Beginning
by Mara Bovsun - UPI Science News
LOUISVILLE, Ky. (UPI 10/1/98) -- A researcher pioneering a highly controversial surgery -- the hand transplant -- says that doctors may soon* use a similar method to give people a new face.
Louisville, Ky., plastic surgeon John Barker says scientists will know by around the first of the year if hands can be harvested from cadavers and sewn onto people whose own hands were cut off in accidents or because of disease.
By that time, scientists will know if the surgery and the combination of powerful antirejection drags has worked, he says.
Then, Barker says, "If you can do a hand, you can do a face."
Barker, an associate professor of surgery and director of plastic surgery research at the University of Louisville, says that the same drugs used to suppress the immune response in the hand transplant could also work in repairing facial deformities, such as jaws lost to cancer and disfiguring injuries from bums, car accidents, dog bites and gunshot wounds.
Barker says, "If we are successful with hands, doing something like a face is not a huge leap."
Barker's group announced in July that it had gotten the go-ahead to perform a hand transplant, and has been screening potential recipients.
But, in a move that surprised the Louisville team, doctors at a hospital in Lyon, France, performed an arm and hand transplant on a 48-yearold businessman from Perth, Australia. Barker expects to conduct his first hand transplant soon, and says that he has approval to conduct transplants for up to 20 patients.
Faces and hands have the same mixture of tissues--bone, nerves, muscle and skin. But skin is the organ that creates the biggest transplant challenge because it is so readily rejected, Barker says.
If human hand transplants work as well as the animal experiments on pigs-- in which about 75 percent to 90 percent of the grafts survived for 90 days -- it will open the door to transplanting other body parts.
Reaching 90 days is the make-or-break mark, he says. After that time, the risk of acute rejection drops sharply and the chances that the transplant will survive rises.
He says that after the first hand transplants reach the 90-day mark, there is nothing that should prevent the doctors from giving the face a try.
Barker tells UPI, "It could be as soon as three months."
But not everyone is enthusiastic. Asked about the possibility of seeing face transplants anytime soon, W.P. Andrew Lee, chief of hand surgery, Massachusetts General Hospital, Boston, says, "I'm not optimistic."
He says the problems of suppressing the immune system are too formidable, and that the high doses of drugs needed would pose significant danger to the patient's health.
He says the French group that recently transplanted an arm and hand may have moved too quickly without adequate proof of safety of the method from laboratory and animal experiments.
And apparently there was competition for the world's first hand transplant patient.
Barker says the first hand transplant patient, Clint Hallam, was one of about 100 potential recipients screened by the Louisville group. They were planning to have a member of their team meet Hallam in New York, to discuss the procedure. Barker says they called his home and got his wife on the phone. When they tried to set up a meeting in New York, she said that he wouldn't be there. He already had a hand.
Barker says, "That' s how we heard about the French experience."
Lee notes unpublished Louisville animal data has not been subjected to the process of scientific scrutiny known as peer review. He says the key to success will not be in surgical methods -- plastic surgeons routinely perform delicate operations to reattach fingers and rebuild faces.
Lee says, "We already know how to do it."
But the problem that remains for face transplants, however, is how to guarantee the immune system will not attack and destroy the transplanted tissue. Immune suppressing drugs that might protect the new face do so at the risk of the patient' s health.
Lee says, "A whole new strategy is the answer."
A plastic surgeon, Barker says that facial disfigurement is one of the most devastating kinds of injuries, and there are no good methods now to rebuild a face.
In replacing a jaw that is cut off because of cancer, for example, doctors usually have to perform five to 10 operations, taking pieces of bone and skin from other parts of the body, like the arm, and fashioning a new face.
The rebuilding process can take a decade or more, he says, and even in the best cases, it never really looks normal.
Barker says, "It is very difficult to make an arm look like a jaw. Better results would come from taking a perfectly formed jaw from a cadaver and putting it in place."
He also says that a face transplant would give seriously burned patients a better chance at a normal life. Barker says, "We could cut off all the scarred skin and drape over a donor's skin."
And, while that prospect raises thoughts of the sci-fi thriller Face Off, in which John Travolta and Nicholas Cage trade faces, Barker says that the new face would look a lot like the old one, because in bum injuries, the underlying bone structure remains the same.
Barker says it would be a matter of draping new skin on the scaffolding. He says, "It would look more like the person used to look because the structure underneath is the same."
He says some things, like lips, would be different, looking more like the dead donor.
Barker says, "I have no question we could make them look normal."
An editorial in New Scientist magazine, which first published Barker's predictions, says there are several problems to be overcome, some of which are psychological and moral.
They write, "finding suitable donors would be doubly hampered by the fact that few relatives of the dead or dying would want their loved ones' faces used in this way....The idea of a market for young faces emerging among the aging rich, meanwhile, is too awful to contemplate."
Scientists have criticized hand transplantation, saying that the benefits of getting a new hand do not justify the risks of having to take the powerful immune system squelching drugs that will keep the body from rejecting the new limb.
But, Barker says that the disabled people he has seen are willing to take the risks; they just want a new hand. He says they believe they have .no life, and are constantly humiliated because they need help to perform everyday functions, like going to the bathroom.
Life is even harder, he says, for people with facial deformities. "You never see them," Barker says, "They never go out."
Lung Transplant Recipient Goes Home
Tokyo (AP 12/28/98) -- A 24-year-old Japanese woman who received the country' s first lung transplant from a living donor was released on Monday from a hospital in western Japan, local media reported.
The unidentified woman received half of her 48-year-old mother's left lung and one-third of her 21-year-old sister' s right lung in October. An incurable lung disease had left her unable to breathe on her own.
Doctors at Okayama University Hospital discharged the woman after her breathing capacity improved to about half of that of a normal adult woman, Kyodo News agency reported.
"Breathing has become a lot easier... I feel like I've been born again," she was quoted as saying by Kyodo.
Hospital officials in Okayama, some 340 miles west of Tokyo, were unavailable for comment Monday.
Japanese doctors have performed lung transplants before-- but never using organs from a living donor.
Organ transplants have been extremely rare in Japan because of a former law that recognized death only after a patient' s heart stopped beating. Once the heart stops, organs such as hearts and lungs usually become unsuitable for transplant.
A recent law recognizes brain death, but doctors have yet to perform any transplants from a brain-dead donor.
The nation's first lung-transplant recipient must stay in Okayama for checkups three times a week, but she may be able to return to her hometown in Nagano prefecture, northwest of Tokyo, as soon as February, Kyodo said.
Florida Boy Has First Head-Lung-Liver Transplant
Pittsburgh (Reuters 12/12/98) - A threeyear-old Florida boy stricken with rare heart and liver problems has become the first child ever to receive a heart-lung-liver transplant, U.S. surgeons said Friday.
Brendon Ednie of Dayton, Florida, born with a disorder that left him without a pulmonary artery connecting his heart and lungs, received the new organs during a 20-hour operation performed on Aug. 21 at Children's Hospital of Pittsburgh. All four organs, including two lungs, came from the same donor.
Surgeons did not announce the quadruple transplant for nearly four months because they were waiting for his condition to stabilize.
"At this point, we are unable to predict his prognosis, but we are optimistic that this operation will improve the quality of Brendon's life," said Dr. Jorge Reyes, who led the Pittsburgh team with fellow pediatric surgeon, Dr. Frank Pigula.
Brendon was listed in good condition but remained in the hospital's intensive care unit Friday. Doctors hoped to discharge him to a rehabilitation center before Christmas.
The boy was born with Alagille Syndrome, which is characterized by fewer than normal bile ducts in the liver and sometimes accompanied by abnormalities of the heart, eyes, spine or kidneys.
Brendon's liver had no bile ducts at all, and doctors believe he had been able to survive without a pulmonary artery by leeching small amounts of oxygen from arteries in his aorta. He would have died within a year if left untreated.
Doctors are continuing to watch the boy closely for signs that his body is rejecting the new organs.
Children's Hospital said only one other heart, double-lung and liver transplant has ever been performed in the United States, while a few have been done in Britain. In all of those cases, the patients were adults.
LVAD Pumps May be Bridge to New Life Without Transplant
NEW YORK, (UPI 11/30/98) -- Doctors say they may have found a new use for the heart pump they have been using to keep patients alive while they wait for a heart transplant.
In Tuesday's Circulation: Journal of the American Heart Association, researchers from the Columbia-Presbyterian Hospital found that the left ventricular assist device (LVAD) may have helped a small number of patients' hearts recover to the point that they no longer needed a transplant.
The implantable mechanical heart has been used for many years to take over the pumping function of the heart for patients awaiting trans- . plants.
Dr. Donna Mancini said the study found "significant recovery" in several patients on LVAD therapy, illustrating that some"patients at the end stages of heart failure still possess heart tissue that can be restored to normal or nearnormal function."
She and her colleagues studied 111 patients who received the LVAD while waiting for a new heart. When it came time for patients to receive a new organ, five were able to be weaned from the device and did not need a transplant.
Despite the small number, the results were "strikingly important," Mancini said.
"All of the patients had presumably irreversible end-stage heart failure," she said. "Yet these patients demonstrated that their heart function could be dramatically modified and almost returned to normal for short periods."
The LVADs were most helpful for individuals whose exercise capacity was high, Mancini said. But she said the mechanism underlying the improvement is not yet known.
Previous research has shown that LVADs were able to reduce the workload of the failing left sides of hearts to such an extent that some heart muscle cells recovered their ability to contract and relax.
If further research shows this type of mechanical help shows promise, not just as a bridge to transplantation but also to recovery, showing that "some types of cardiomyopathy may be curable," Mancini said.
"In the future, heart failure could conceivably be reversed rather than just managed," she said, and more research in this area could "open the way to cure."
About 4.9 million Americans suffer from heart failure, the only form of heart disease that is significantly increasing in the population.
Therapies for heart failure currently include drugs that reduce the heart' s workload to slow the progression of the disease and transplants.
For patients with advanced heart failure, transplantation currently is the only lifesaving therapy. Unfortunately, she said, few people receive the surgery because of a shortage of donor organs.
Woman Gets Christmas Eve Transplant
SEATTLE (AP 12/25/98) -- Eighteen-year-old Nicole Ehli entered the University of Washington Medical Center in November, hoping to have her falling heart replaced.
By Wednesday, the 4-foot-8, 70-pound woman from Puyallup had an infection and her left ventricle was failing. Dr. Dan Fishbein, a cardiologist, called heart surgeon Edward Verrier at home.
"I think she's going to die tonight," he told Verrier.
But Ehli got a gift of life on Christmas Eve when a heart -- a perfect match -- became available in Las Vegas.
"It was one of those things where everybody looked at each other and said, 'There's no better Christmas present than that,'" Verrier said.
Thirteen doctors and nurses worked for seven hours during the surgery. Ehli was listed in critical but stable condition Friday, standard for a post-transplant patient.
She was conscious and breathing on her own. Her new heart was pumping twice as much blood as the old. Her parents were fatigued. And her doctors were ebullient.
"Dan had said to me, ' You know, the only request she wanted for Christmas was a new heart,'" Verrier said.
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