Ask yourself: 'If I needed a kidney, how much risk would I be willing to take?'

For a person already in need of a kidney transplant, a willingness to accept infection risk can come down to the amount of the infection risk, in this case as it pertains to HIV, the age of the donor -- and how long the patient has been waiting.

The waiting is hard.

Researchers at the University of Pennsylvania asked 175 kidney transplant candidates about their willingness to accept a kidney from a donor who might be at higher risk of viral infection. Most (58.9%) would accept at least some risk.

The results may not surprise. But they're a sobering reflection of a crucial need. And they're worth thinking about: How much risk would you accept? The answer for those not on the wait list may depend on whether they know someone on the wait list.

Here's ...

•  the study, as it will appear in the Clinical Journal of the American Society of Nephrology.

•  the press release from the American Society of Nephrology.

•  statistics from the National Kidney and Urologic Diseases Information Clearinghouse on kidney and urologic diseases.

•  general information from the Mayo Clinic on kidney transplants.

•  a recent L.A. Times article about the long-term health of people who donate kidneys (at least as good, if not better, than people who don't donate kidneys)

•  a first-person piece, also from The Times, about kidney donation.

•  and information from the National Kidney Foundation on how to become a living donor.

-- Tami Dennis

Illustration credit: Jon Conrad / For The Times

 

People in need of liver donations may need to ask

More than 15,000 Americans are in need of a liver transplant, but the number of donated livers available each year from deceased donors is less than half that. However, live donation -- when an individual donates a part of his or her liver -- is an alternative that could help many of those on waiting lists.

A new study suggests that transplant candidates who talk about their need for a living donor with family and friends are much more likely to receive a donation. Researchers from six New York medical centers and the New York Center for Liver Transplantation provided wait-listed patients at five liver transplant centers in New York with a peer-based educational brochure and DVD that contained testimonials and other data from previous living donors. The study showed that liver-transplant candidates' ability to discuss live donation increased because of the materials. Compared with the period prior to the study, living donation increased 42%, and the number of individuals who volunteered for donation evaluation increased by 74%. The study is published in the January issue of the journal Liver Transplantation.

People in need of liver transplants often do not fully understand the process of live donation, worry about the risks to the donor and are thus reticent to discuss it, the lead author of the paper, Samantha DeLair, said in a news release.

"It is important to follow live donors post-donation both for the donors themselves and to provide wait-list patients and their loved ones with as much information as possible as they consider live donation for themselves," she said.

The materials used in the study, "In Their Own Words -- The Experiences of Living Liver Donors," can be accessed here.

-- Shari Roan

Photo: A liver transplantation surgery. Credit: Carolyn Cole / Los Angeles Times

Gene therapy could make more lungs available for transplants

A new gene therapy procedure to restore function in lungs damaged during harvesting from donors could make more lungs available for transplanting, Canadian researchers said today. Currently, only about 15% of potential donor lungs are actually used because the rest are too damaged to implant. The new technique, which has not yet been tested in humans, could prevent that damage or even reverse it, potentially expanding the supply of lungs sharply.

Lung transplants are the definitive therapy for many end-stage lung diseases, but they are fraught with problems. Because lungs are more likely to be rejected by recipients' bodies, the five-year survival rate is only about 50%, lower than that for heart, liver or kidney transplantation. And because of the shortage of donor lungs, an estimated 234 people in the United States died while waiting for a lung transplant last year, according to the Organ Procurement and Transportation Network. About 1,800 people in this country are now on the waiting list for a lung, the agency said.

The problem in both cases is inflammation caused by insufficient amounts of an immune molecule called lL-10, which damps inflammation. Donated lungs are immediately chilled on ice, which destroys any IL-10 that may remain in the lungs, allowing substantial damage to occur before the organ can be implanted. And a lack of IL-10 after transplantation increases the likelihood that inflammation will damage the organ and induce rejection.

To circumvent this problem, Dr. Shaf Keshavjee and Dr. Marcelo Cypel of the University Health Network in Toronto and their colleagues developed a two-pronged approach. First, they devised a domed chamber that keeps the lungs at body temperature, preserving IL-10, and that pumps a solution containing oxygen and nutrients through the lungs to keep them alive. That alone was sufficient to prevent the lungs from deteriorating and improve the success of transplants in animals. But the team did not stop there. They then performed gene therapy on the lungs, using a defanged adenovirus to deliver a gene that is the blueprint for IL-10 into the lung tissue. The gene was quickly taken up by the cells and began producing the molecule, which reduced inflammation. "We're transducing the cells in the lung to become little IL-10 factories," Keshavjee said in a statement.

The team reported today in the new journal Science Translational Medicine that they used the technique to remove lungs from pigs -- whose metabolism is similar to that of humans -- perfused them in the domed chamber for 12 hours, then successfully re-implanted them in the animals. They then took human lungs that were considered too damaged for transplantation and subjected them to the same treatment. They found that the treatment significantly improved blood flow through the lungs and improved their ability to take in fresh oxygen and remove carbon dioxide. The higher levels of IL-10 persisted in the lungs for 30 days, suggesting that the procedure could also reduce rejection of the organs. The lungs were not implanted in humans, however.

The procedure "not only may result in improved preservation of lungs [before transplantation] but also may repair lungs otherwise not suitable for transplantation," Dr. David S. Wilkes of the Indiana University School of Medicine wrote in an editorial accompanying the report. But several questions remain, he added. The pig transplants involved putting an animal's original lungs back in place. Implanting lungs from a donor might present more problems. The use of adenoviruses has also caused complications in some gene therapy experiments when the virus inserted the added gene at an inappropriate location.

Keshavjee said the team hopes to begin human trials within a year or so. They will first offer the treatment to patients who have been waiting for a donor organ for a long time and are in immediate danger of dying, and they will carefully explain all the potential risks, he said. He thinks the technique could be widely used for lung transplants within five years, and that it may eventually be applicable to improve survival of other organs as well.

-- Thomas H. Maugh II

Top photo: Dr. Marcelo Cypel, left, and Dr. Shaf Keshavjee deliver the IL-10 gene into human lungs via a bronchoscope. Bottom photo: Human lungs in the domed preservation chamber. Credit: Dr. Marcelo Cypel

He made the most of his second heart

 

Tony Huesman of Washington Township, Ohio, died Sunday due to complications from cancer at the age of 51. But he almost died more than 30 years ago from cardiomyopathy.

Instead, Huesman – a student at Miami University in Ohio at the time – traveled to Stanford Hospital & Clinics in August 1978 and became one of the first people to receive a heart transplant in the program pioneered by Dr. Norman Shumway.

He lived with that heart for more than 30 years – a record among heart transplant patients.

Huesman was optimistic about his chances from the start. When he was prepping for surgery and a Catholic priest arrived to administer his last rites, he turned him away. “No, no, I’m not going to die,” he recalled telling the priest in an interview. “I’m going to make it through this.”

Huesman also recalled becoming so bored during his three-month recovery in the hospital’s isolation unit that he sometimes mopped his room just to have something to do.

He returned to his native Dayton and got a job in a sporting-goods store, where he spent his entire career. He said he never made long-term plans because he didn’t know how much time he had. At the time, five years was the longest anyone had lived with a transplanted heart.

He was originally uncertain about marriage, but in 1997, he married an elementary school teacher named Carol. She was impressed by her husband’s generosity. He founded a nonprofit called the Huesman Heart Foundation to teach kids about heart health, cardiovascular disease and organ donation.

“He got one heart, and he gave his heart out tenfold,” Carol said in a statement released by Stanford.

-- Karen Kaplan

Live organ donation seems to begin safely enough

If no good deed goes unpunished, living organ donors may have need to worry. L.A. Times columnist David Lazarus weighs in today with a look at one possible effect of organ donation on such donors.

In Organ donors run risk of being denied health insurance, he writes of kidney donor Patricia Abdullah who recently lost her job and thus her health insurance: "Now she wonders what will happen if she can't find another job with group coverage. If she turns to the individual insurance market, will her act of compassion as an organ donor be perceived by insurers as a 'preexisting condition,' resulting in higher premiums or even denial of coverage?"

Advocates for organ donation say such things happen. Insurers say, well, it depends on the person.

Regardless, the need for such donations can't be denied.

What does seem clear is the relative safety of kidney donation for most people. Here's an L.A. Times report from earlier this year: Kidney donors have a normal life span, study finds

And notes this synopsis published this month in the journal Advances in Chronic Kidney Disease: "Living kidney donation continues as the cornerstone of transplantation. ... Currently, it can be stated that living donation is, on the whole, safe, with few perioperative deaths, complications, or long-term medical issues." 

(Click the jump to read more. If you've never seen one, on the jump is a close-up view of a kidney transplant surgery.)

Silence breeds suspicion about many things, as Steve Jobs knows

News about Steve Jobs' health has begun to follow a certain pattern: silence, rumor, confirmation of rumor, questions about the original silence.

Now the questions have moved beyond the usual ones about the impact on Apple.

Today's Bloomberg story begins: "Steve Jobs, Apple Inc.’s chief executive officer, got a liver transplant quickly because of a U.S. system that favors patients with the means to rush to geographic areas where there is less competition for organs."

The Associated Press notes: "A celebrity like Apple CEO Steve Jobs scores a rare organ transplant and the world wonders: Did he game the system?"

Here's what the United Network for Organ Sharing says in response: "Recent news regarding liver transplantation has raised public questions regarding how donated livers are allocated and potential variation in transplant waiting times. ... Liver waiting time is greatly influenced by a formula that assigns priority for organ offers based on the candidate's risk of dying within three months without a transplant. For candidates 12 or older, this formula is called a MELD score."

The blog Respectful Insolence offers an explanation of this score and an overview of the current questions, controversy and second-guessing. The author concludes by suggesting that, regardless of what people think of the Jobs case, perhaps a wider discussion is in order:

"Part of the reason for the questions and criticisms of how Jobs managed to use his wealth and power to improve his odds as much as is legally possible is that there are such regional disparities in wait times. If there were not, neither Jobs nor anyone else would feel as compelled to do something like move to Memphis temporarily in order to take advantage of Tennessee's shorter wait lists for liver transplant."

Open acknowledgment tends to limit suspicion.

 -- Tami Dennis

Photo: Steve Jobs, who had been undergoing treatment for pancreatic cancer. Credit: Associated Press

Number of patients who die awaiting kidney reaches new high

The shortage of donor organs has been a problem for many years, and it isn't getting any better. A study published today found that 46% of patients age 60 and older currently on the waiting list for a kidney transplant will die before receiving an organ from a deceased donor. The study is published in the Clinical Journal of the American Society of Nephrology.

People in search of a kidney may have better luck trying to find a living donor -- someone who will give up one of their two kidneys.

"We have now reached a notable benchmark in which nearly half of newly listed older candidates will not survive the interval to receive a deceased donor transplant," the lead author of the study, Jesse D. Schold, said in a news release. "Our results emphasize the particular need to consider living donation as an alternative source for some older patients -- or alternatively, the critical importance of navigating the steps to receive a deceased donor transplant as rapidly as possible."

Schold, an associate instructor of medicine at the University of Florida, analyzed data on nearly 55,000 patients over age 60 who were on the U.S. waiting list for a kidney transplant from 1995 to 2007. Patients age 70 and older and African Americans were even more likely to die before receiving a kidney. Besides age, factors such as blood type and being on dialysis at the time of listing also affected the odds of receiving a transplant. The study also found wide variations in regions of the country.

The number of people who need kidneys is increasing while the number of donors has remained stable. That means time on the waiting list has grown and more people die. Only certain patients are viable organ donors at the time of death. While many family members consent to donation, an astonishing number of Americans refuse to offer what has been called "the gift of life."

Information on organ transplantation, donation and procurement can be found on the websites of the United Network for Organ Sharing and Donate Life America.

-- Shari Roan

Photo: A patient receives kidney dialysis. Credit: Mark Boster / Los Angeles Times