Going for a transplant? - More careful please.

[Guest guest]

Almost all of the problems associated with this article are directly atributable

to the way that we practice medicine and health in the western world.

 

Many of these people needing transplants today are victums of skyrocketing

diseases because of nutrient deficient toxic foods, toxic medicines which damage

organs, toxic water, etc. and who then develope chronic diseases which then

recieve only allopathic poisons to treat.

 

No prevention, no vitamins, no wholesomely grown foods, no gentle herbs, just

more and more radical expensive solutions. After all, that is where the real

money is for the system and it's participants who derive financial benefit.

 

If the objective of the system was really health instead of money all of that

would logically be completely reversed to obtain it. F.

 

 

 

 

 

 

 

 

July 10, 2005

Will Any Organ Do?

http://www.nytimes.com/2005/07/10/magazine/10ORGANS.html?th & emc=th

By GRETCHEN REYNOLDS

 

Last summer at one hospital in Dallas, four people died from rabies, an

unheard-of level of incidence of this rare disease. As it turned out, each

patient was infected by an organ or tissue -- a kidney, a liver, an artery --

that he or she received in a transplant several weeks earlier. Their shared

donor, William Beed Jr., a young brain-dead man, had rabies, caught apparently

through a bite from a rabid bat, something the surgeons never suspected. They

all thought he had suffered a fatal crack-cocaine overdose, which can produce

symptoms similar to those of rabies. ''We had an explanation for his

condition,'' says Dr. Goran Klintmalm, a surgeon who oversees transplantation at

Baylor University Medical Center, where the transplants occurred. ''He'd

recently smoked crack cocaine. He'd hemorrhaged around the brain. He'd died.

That was all we needed to know.''

 

Since the rabies deaths, recriminations have flown, procedural reviews have

begun and sorrow and regret have dogged the families of the organ recipients.

But the outbreak also exposed a controversy that until then was roiling only the

rarefied world of transplant specialists. The issue, although freighted with

monetary and bio-ethical complexities, can be boiled down to one deceptively

simple question. Should transplant surgeons be using organs from nearly anyone?

 

 

Organ transplanting has become, in fundamental ways, a victim of its own

success. Not long ago, transplant surgery was a dodgy, last-ditch response to

end-stage kidney failure. But with the advent of better antirejection drugs and

surgical techniques, transplantation has become the treatment of choice for a

growing range of conditions, including chronic kidney failure, end-stage lung or

liver disease and some congestive heart failure. Kidneys are implanted

routinely, as are increasing numbers of livers, hearts and pancreases.

 

Fifteen years ago, about 20,000 people in the United States were on waiting

lists for organs. Today, about 88,000 are. The number of donors has not come

close to keeping pace. There were about 15,000 transplants completed with organs

from cadavers in 1993 and about 20,000 last year. Patients used to wait weeks

for an organ. Now they wait years. On average, 18 people on organ waiting lists

die every day.

 

Doctors, patients and politicians concerned about transplantation have responded

with proposals for increasing donations. In 2002, the American Medical

Association voted to endorse pilot projects to give families financial

incentives, like cash payments to help cover the costs of funerals, for donating

their deceased loved ones' organs. The next year, Congress held hearings on the

topic. Representative James Greenwood, Republican of Pennsylvania, introduced a

bill that would have authorized demonstration projects to determine whether

offering financial incentives to families of brain-dead patients would increase

donation rates. There was a public outcry against ''buying'' organs and the bill

died. (A few states offer tax incentives to families who donate relatives'

organs.)

 

Increasingly desperate people in need of transplants have turned to highway

billboards and Internet sites to solicit donors. Donations from living people

have helped. Today the number of living kidney donors is greater than the number

of dead donors. But living donations of other organs are rare because they can

be dangerous or are impossible.

 

All of which has led transplant specialists to quietly begin to relax the

standards of who can donate. As a result, according to surgeons I spoke with and

reports in medical journals, the transplanting of what doctors refer to as

''marginal'' or ''extended criteria'' organs, organs that once would have been

considered unusable, has increased considerably in the last several years. The

definition of a marginal organ differs from transplant center to transplant

center and also from one type of organ to another. This makes it difficult to

quantify the increase in the use of these organs. But the expansion is

undeniable and has become a much-discussed issue in the field, a topic of ethics

papers, surgical conferences and soul-searching on the part of many of the

surgeons involved.

 

 

Fifteen years ago, William Beed Jr. would not have qualified as an organ donor.

When he died in May 2004, he was 20, unemployed and had been living with his

mother and sister in a bat-infested apartment building in Texarkana, Ark.

Throughout his life, Beed had been in and out of trouble, his mother

acknowledged when I spoke to her recently. Marijuana and cocaine were found in

his urine at the time of his death, according to a report in The New England

Journal of Medicine.

 

Beed's drug use alone would have disqualified him as a donor. (It still would

keep him from giving blood.) ''What people have to understand is that donors

now, except for the 75-year-olds who die of intracranial bleeds, are not part of

the church choir,'' Klintmalm told me when I met with him in Dallas earlier this

year. ''The ones who die are the ones you don't want your daughter or your son

to socialize with. They drink. They drive too fast. They use crack cocaine. They

get caught up in drive-bys.''

 

The donor pool was different in the early days of transplantation. Beginning in

the 60's and through the 80's, a majority of donors were head-trauma victims,

people who had been involved in car accidents, botched suicides or tumbles off

horses or ladders. These donors were almost all young, between 15 and 45. (In

the 80's, few transplant surgeons would take a 50-year-old organ.) They were of

average weight, with no history of diabetes, cancer, infectious disease,

imprisonment, high blood pressure, cigarette-smoking habits, tattoos (which have

been associated with blood-borne illnesses) or unsafe sexual behaviors. The

chosen organs, said Klintmalm, who has been in practice for about 25 years,

''were pristine.''

 

It was easy to adhere to those standards at first. ''We didn't perceive any

shortage of organs back in the day,'' says Dr. Nicholas Tilney, the Francis D.

Moore professor of surgery at Harvard Medical School and one of the nation's

premier kidney-transplant surgeons. ''If a patient had to wait a few weeks for a

kidney, that seemed long. We never foresaw the kind of situation we have

today.''

 

Conditions began to change in the 90's. Seat-belt use was more common by then,

and fewer Americans were dying of head injuries, depriving transplantation of

its most reliable sources of pristine organs. At the same time, the demand for

transplants was growing. Surgeons had little choice but to start looking to

alternative sources for organs.

 

 

On April 28, 2004, William Beed Jr. complained to his mother that he was feeling

sick. ''He couldn't swallow,'' his mother, Judy, a practical nurse, recalled

when I spoke with her earlier this year. They decided he should go to an

emergency room, she said, and the doctors there examined him and sent him home

with medication, saying he was dehydrated. By that evening, he was drooling,

throwing up, shaking and still having difficulty swallowing. His fever was

rising. He started vomiting blood. His father drove him to another E.R.

 

Diagnosis is often a matter of context. Because of doctor-patient

confidentiality rules, doctors involved with this case would not talk about it

on the record, but a few did say that had Beed not had cocaine in his blood, the

E.R. doctors might have investigated his symptoms more aggressively instead of

assuming he had overdosed. (Because no autopsy was done, doctors have not been

able to establish whether the rabies or the drugs actually killed him.)

 

Soon after, Beed fell into a coma and was put on a ventilator. After a few days,

his mother said, the doctors told her and her family that their son was

brain-dead. Transplant surgeons use organs from brain-dead patients because they

still have a heartbeat, and if the patients are placed on a ventilator, their

organs continue to get oxygen. Without oxygen, the organs degrade within

minutes.

 

According to Judy Beed, a transplant coordinator approached her and asked

whether she would be willing to donate her son's organs. She agreed, and in the

middle of the night on May 4, the parents of Joshua Hightower received a phone

call offering them William Beed's kidney.

 

Joshua Hightower, who lived in Gilmer, Tex., had had kidney problems since he

was 2. They had grown progressively worse over the years. ''When he was 16,

things got really bad,'' said his mother, Jennifer Hightower, a special

education assistant in the public schools, when I met with her in February. ''He

was pale and droopy. He weighed 112 pounds. He was sleeping all the time.'' His

teachers at Gilmer High School walked him up and down the halls between classes

to help him stay awake. A doctor urged his parents to get him on the waiting

list for a kidney. In the meantime, Joshua began daily dialysis at home. The

process, which purified his blood of toxins, required that he be home every

evening by 10. Once there, he was tethered to the dialysis machine for between 9

and 16 hours. When the Hightowers received the call from the hospital, they

jumped at the opportunity.

 

 

It is impossible to know now when the first less-than-pristine organ was

retrieved and transplanted. But over the course of the 90's, according to

surgeons I spoke with, many barriers fell. Age was almost certainly the first to

go. Instead of accepting donors 45 and younger, some transplant centers began,

gradually, to take those who were 48, 49, 50 and then up from there. ''I wrote a

paper for The Journal of the American Medical Association back in 1989,'' Dr.

Lewis Teperman, director of transplantation at New York University Medical

Center, told me when I talked to him earlier in the spring. ''It was looking at

the outcomes of using older donors. By older donors, we meant someone over 60.

That was considered really, really old.'' Recently, N.Y.U. transplanted a liver

from a deceased 80-year-old. A couple of years ago, a Canadian hospital used a

93-year-old liver from a deceased donor.

 

Almost imperceptibly, most of the other traditional prohibitions evaporated.

Surgeons started accepting lungs from people who had smoked, sometimes for

decades. They accepted hearts and kidneys from those who had had high blood

pressure or had been obese. They took organs from alcoholics and drug users.

(Because cocaine is flushed from the body relatively quickly, it is considered

one of the least problematic drugs in donors.) Infectious disease was no longer

an automatic disqualifier, either. Most surgeons would have once discarded

organs from someone with hepatitis C, for instance, since it destroys the liver.

But the virus, often spread by injected drug use, is now so common in urban

areas that few transplant surgeons will immediately turn down an organ infected

with it. Ideally the surgeons implant these infected organs into patients who

already harbor hepatitis C. But lately there have been cases in which doctors,

as a last resort, have transplanted infected livers into patients

who don't have hepatitis C. There is little published data yet about the

long-term outcomes for these patients.

 

The expansion into ''marginal'' or ''extended criteria'' organs has not been

systematic. One transplant surgeon will use a marginal organ from, say, a

morbidly obese donor or a drug user. His patient survives. Then he will repeat

it again and again. At the next big transplant conference, he will talk to his

colleagues about his success, and they will go back to their own transplant

centers and accept, for the first time, an obese donor or a crack-cocaine user.

''You sometimes have to experiment,'' Klintmalm says.

 

Klintmalm and other surgeons I spoke with who work in urban areas say that

marginal organs are well on their way to being the majority of organs they

transplant. Klintmalm, though, takes issue with the very definition of marginal.

''Older organs should not be called 'marginal,''' Klintmalm maintains, referring

to donors over age 55. ''They're standard for us.'' But two years ago, when the

United Network for Organ Sharing (UNOS), the private organization that oversees

organ transplantation in the United States, published its first definition of

extended-criteria organs, age was prominent. The UNOS classification, which

applies only to kidneys, defines a marginal kidney as one that comes from a

deceased person over 60 or one over 50 with two of three characteristics:

stroke, hypertension or abnormal kidney function. The definition does not

mention smoking, diabetes, hepatitis, alcoholism, obesity or drug use.

 

No government agency sets standards for what makes an organ acceptable. The

Department of Health and Human Services contracts with UNOS to handle the

day-to-day logistics of the transplant system (getting organs to the next person

on the list and so on). But the government's main concerns in policing

transplants are that donors and recipients be matched for blood type and that

organs be distributed primarily based on medical need, not the wealth, race or

celebrity of the recipients. So decisions about whether organs are usable are

made on the spot by individual surgeons.

 

To date, not many peer-reviewed studies have been published that examine the

long-term outcomes of using marginal organs. The research that has been done

mostly looks at kidneys.

 

Recent studies of older kidneys (usually defined as over 50), for instance, have

shown that they can function almost as well as younger ones. They don't work for

as long, however. In a report presented by UNOS, which adjusted for the health

of the recipient, among other things, about a third of extended-criteria kidneys

failed within three years. (About 20 percent of non-extended-criteria organs

also failed within three years.) Transplantation, even under the best of

circumstances, still involves risk. In assessing marginal organs, it is

difficult to know whether a bad outcome -- the recipient's death or the organ's

failure -- was caused by the organ, the surgery or the fragile health of the

recipient.

 

Except for age-related research, few large-scale studies have yet investigated

the effects of other extended-criteria kidneys. Do kidneys from diabetics, the

obese, alcoholics, smokers or drug users generally work over the long term?

Surgeons and scientists can't say for sure.

 

There is even less information about imperfect livers, hearts or lungs. Surgeons

do know that livers, for some reason, don't age at the same rate as their

original owners. Sixty- or 70-year-old livers can be in fine shape. Hearts and

lungs aren't as durable and are more likely to fail as they get older. But

surgeons are using them. A 2003 report by the UNOS-administered Organ

Procurement and Transplantation Network stated: ''The need to more agressively

utilize available organs for the candidate population as a whole competes with

the expectation of each individual.''

 

 

And this is, ultimately, the crux of the matter. The marginality of any given

organ is relative. It depends on how sick the waiting recipient is. There is a

kind of mad, desperate arithmetic that goes into calculating whether to use a

marginal organ and when. ''We're all trying to quantify the risks,'' Lewis

Teperman, the N.Y.U. transplant director, says. ''If we know that there's a 0.7

increase in relative risk of an extended-criteria organ failing, which is about

what we've seen in kidneys so far, you take that number, look at your patient's

chances for survival, which might be 90 percent with a perfect organ and 80

percent with an extended-criteria one and. . . . '' He trails off. ''It sounds

very clinical when I put it like that, which isn't what I want.'' He starts

again. ''It's easy enough to come up with these kinds of calculations. But it's

difficult for any of us to apply them in practice, when we're dealing with very

sick people's lives.''

 

Dr. Marlon Levy, a liver-transplant surgeon in Fort Worth and the medical

director for the Southwest Transplant Alliance, the group that unwittingly

collected and distributed the rabid organs last year, told me: ''You have this

immensely complex weighing of benefits and risks in each of these cases. Is the

recipient sick enough to justify using any organ, even a really marginal one, to

try and save his life and give him a few more years? Or say you have a slightly

healthier patient, and you think he's doing well enough to pass on a marginal

organ and wait for a better one. Then, suddenly, he develops complications and

dies before another organ becomes available. Were these decisions wrong?''

 

It is extremely difficult to predict outcomes. ''The best thought-out decision

doesn't work out all the time,'' Teperman says. ''I have put in

extended-criteria organs that worked perfectly, and the person walked out the

door a week later. Other times, a patient has gotten an extended-criteria organ

and remained hospitalized for months. I've also waited, thinking a better organ

would come along, and the patient has died in the meantime.''

 

To some extent, surgeons' hands are tied. In general, the current system

requires that the most desperately ill patient must get the next organ that

comes in, whether it is the best organ for that patient or not. ''Things would

work best if we could put the most extended-criteria organs into the less

critically ill patients and the healthiest organs into the sickest patients,''

Teperman says.

 

The calculus may be even more complex from the patient's perspective. Dr. Grant

Campbell, an epidemiologist with the Centers for Disease Control and Prevention,

had a liver transplant in 1990. At that time, he was chronically ill and

knowingly accepted an organ infected with cytomegalovirus, a common and usually

mild disease but one that can be serious in immunosuppressed transplant

patients. Fortunately, he didn't become sick.

 

Even the most rational attempts to weigh the risks and benefits of marginal

organs tend to fall apart in the face of truly boundless human despair. ''We

would have taken any lungs,'' said Harry Littlejohn, 59, of Lewisville, Tex.,

whose 28-year-old daughter, Carmen, died in 2001 of cystic fibrosis. She had

been No. 1 on the state waiting list for new lungs for eight weeks by then. None

became available. ''We would have done anything to save her,'' he said,

''anything. But there was nothing we could do.''

 

 

Joshua Hightower turned 18 on May 10, 2004, in the transplant recovery ward at

Baylor University Medical Center. Photos from around that time show him propped

up in bed, looking wan, but smiling.

 

Joshua had been added to the lengthy transplant waiting list the year before.

The doctors said they could not estimate how long the wait would be, Jennifer

Hightower, his mother, told me.

 

After the Hightowers received the call from the hospital, his mother recalled,

she had wondered about the donor. Anonymity has been crucial to the workings of

the organ-transplant system. Donation is supposed to be a blind act of altruism.

Donor families aren't told at the time who will receive the organs, and

recipients generally are told only the age and sex of the donor.

 

''You don't want people coming in and saying, 'I'll only donate to Italians.' Or

'I only want them to go to someone in the Ku Klux Klan,''' says Sheldon Zink,

director of the program for transplant policy and ethics at the University of

Pennsylvania. You also don't want recipients turning down organs because of

their own biases.

 

But how much should a surgeon tell a patient who is about to receive a

compromised organ? Should he explain that the new kidney comes from a retiree, a

drug user or an alcoholic, a chain smoker or a member of a motorcycle gang? Does

he have to tell a patient that the organ he is about to receive is considered

marginal?

 

 

" I wish we had been told more,'' Jennifer Hightower says. Her son, she went on

to say, would have declined the kidney had they known more about Beed's

background and his death. Joshua, she says, was not so sick that he couldn't

wait. ''I would have made him pass on it.''

 

Her attitude worries Zink, the ethicist. ''I would question anyone's motivation

in refusing an organ from a drug user,'' she told me. ''They aren't responding

to clinical information, because the available clinical data'' -- the anecdotal

reports from doctors -- ''indicates that organs from crack-cocaine users are

fine, in general. So they must be responding to preconceptions about that

person's lifestyle. That's only one small step from declining an organ because

the donor is black or Hispanic.''

 

At the moment, no formal national medical standards dictate what transplant

surgeons should tell their patients about organs other than kidneys or what they

can withhold. Each doctor makes that decision based on how he feels about the

ethics of the situation.

 

''I believe in erring on the side of telling the patient as much as possible,''

Teperman says. ''We have a lengthy consent form here at N.Y.U., and it goes into

the use of marginal organs. We ask patients if they will accept one. You don't

want to be calling someone at 2 a.m. and saying: 'You can take this organ we

just got in that may not be very good or you can wait and maybe die. What do you

want to do?' That's an unrealistic burden to put on a patient. We try to have

the conversation early on, when patients are a little more clearheaded. That's

not always an easy conversation to have. Some patients would rather not think

about it. They'd rather the doctor just make the decision for them.''

 

Some surgeons insist on making decisions about marginal organs unilaterally.

''There are transplant surgeons who think they absolutely know best,'' Zink

says. ''They don't bother asking the patient if he wants a marginal organ

because they don't want the patient having a choice. They make it for him.''

 

When Zink recently asked surgeons at a major transplant conference how many of

them always tell their patients if they are about to implant a marginal organ,

''about half said they tell the patient,'' Zink told me. ''Half said they

don't.''

 

Some surgeons withhold information because they are concerned about litigation

(better to say nothing than to say that an organ might be compromised, have your

judgment proved right and be sued for it). Others are prodded by compassion.

''There are doctors out there who think that a patient will recover better if he

isn't worrying about the quality of the organ inside of him,'' Zink says.

 

Wry pragmatism also plays a role. ''At some large urban transplant centers,

virtually all organs nowadays are extended-criteria organs,'' Zink points out.

Why discuss the option of accepting or declining an imperfect organ? If a

patient says he doesn't want one, he'll most likely never get an organ at all.

''I've had doctors tell me they don't even tell their patients that they're

about to get an organ that might be infected with hepatitis C because so many of

the donated organs may have it,'' Zink says.

 

 

On Friday, May 28, 24 days after his transplant, Joshua Hightower, who had been

released from the hospital, graduated from high school. He clutched his diploma,

climbed up into the stands and threw up, Jennifer Hightower said. He didn't stop

vomiting all through the celebrations that followed. The next day, he was

stumbling, and by the evening, he was having convulsions. Spit dribbled down his

face. Doctors at the nearest emergency room hurriedly transferred him to the

E.R. at Baylor.

 

Upstairs in the transplant wing, around the same time, three other patients who

had received donations from William Beed Jr. lay dying, each with convulsions,

delirium or pain. Within two weeks, all but Joshua were dead. Rabies was

confirmed as the cause of death a few weeks later.

 

There is no formal system that tracks the short-term fate of individual organs

from a particular donor. Surgeons report raw data about deaths and severe

surgical complications to UNOS. Had all of the people who received an organ from

William Beed Jr. not come back to the same hospital and died, one after another,

their rabies may not have come to light.

 

In May, three people died who had received organs from the same donor in New

England. As it turned out, the donor had passed along lymphocytic

choriomeningitis virus, a rare illness transmitted to humans from rodents like

hamsters. Two of the recipients, after getting ill, went to the same hospital,

which helped doctors there determine that the transplant was the cause.

 

''I doubt very much that this is the only time'' that rabies has killed

transplant patients, says Charles Rupprecht, the C.D.C.'s rabies expert about

the Beed case. ''And I doubt that it will be the last.'' In February, doctors in

Germany announced that four patients there had been infected with rabies after

receiving organs from a rabid young woman who had died, they had thought, of a

heart attack associated with an overdose of cocaine and Ecstasy.

 

''Rabies is a sentinel disease,'' argues Dr. Matthew Kuehnert, the assistant

director for blood safety at the C.D.C., who has studied outbreaks of disease in

transplant recipients. ''It tells us we should be paying attention, that

something needs to change.''

 

What, though? ''We cannot start testing every donor for rabies or any of the

other once-in-a-lifetime diseases that might crop up,'' Klintmalm says. ''We

don't have time. It would cost too much. You might as well shut down every

transplant center. If another case came in today exactly like that one, a young

man who used crack cocaine and died, I would not demand more explanation. Why?

We'll never get the risk of transplants down to zero. It's stupid to pretend we

can. That young man appeared to be a perfect donor. I wish we had more like

him.''

 

 

The broader question is what, if anything, should change in transplantation as

marginal organs become everyday organs? ''We at the C.D.C. wish that there were

more formal disease surveillance and follow-up of transplant patients,''

Kuehnert said. ''We simply don't know the risks of using certain types of donors

at this point.'' The C.D.C. has no authority to require such follow-up and

study, though. Only other regulatory agencies within the Department of Health

and Human Services or state agencies can set such mandates.

 

In June 2004, the New York State Department of Health became the first

regulatory agency in the country to start formally looking into the growing use

of marginal organs and to formulate recommendations about what patients should

be told and what kinds of organs should be allowed. Its report is due soon.

 

In the meantime, the United Network for Organ Sharing has created a designation

for patients who say they will accept a marginal kidney. At the end of February,

42 percent of the adults waiting for a kidney in the United States said they

would take a marginal organ.

 

 

A year ago, while Joshua Hightower lay unconscious but alive, the doctors

decided to surgically remove his transplanted kidney. But by then, rabies (not

yet identified as the culprit) was everywhere in him. His condition worsened. On

June 18, a Friday, doctors tested for brain activity. They found none and

declared him brain dead. Stung with grief, Jennifer Hightower and the rest of

her family sat with the boy through a wrenching weekend while he remained on a

ventilator. On that Monday, his parents agreed to end life support. That

afternoon, with his family watching, doctors turned off the ventilator. His

mother held him as his heart stopped.

 

It will not be a simple matter in the years ahead to decide how best to save

lives with transplants. At some point this year, the number of people on

transplant waiting lists in the United States will very likely top 100,000.

Unless there is an enormous effort, probably from the federal government, to

increase organ donation, the shortage will only grow. ''All these kids we see

with diabetes,'' Nicholas Tilney says, ''so many of them will need a new kidney

in a few years. Where are those organs going to come from?''

 

 

Gretchen Reynolds frequently writes about medical topics. Her last article for

the magazine was about epidemiologists tracking the avian flu.

 

 

 

Copyright 2005 The New York Times Company