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Transplants

Clinical Trials, Immunology, Research, Transplants

Transplant without lifelong drugs gives patient another chance

Transplant without lifelong drugs gives patient another chance

"DCIM100GOPRO"Imagine learning you have an illness. It’s the same illness that killed your mother. You watched her fade, the last years of her life dreadful to watch, unimaginably tough to endure. The same fate awaits you. Until… it doesn’t. Now there’s a therapy that just might save you.

That’s the story of San Francisco Bay Area resident Cynthia Alcaraz-Jew, featured in the fall issue of Stanford Medicine Magazine. Now in her late 40s, Alcaraz-Jew, like her mother, suffers from a rare genetic condition called Alport Syndrome. The ailment leads to kidney, ear and eye problems.

Alcaraz-Jew didn’t immediately luck out. Her kidneys failed first and her younger brother, Xavier, a perfect immunologic match, offered to donate his kidney. Great news, of course, but a transplant usually means years of immunosuppressive drugs, which leave bones brittle and can lead to infections, heart disease, or even, ironically kidney failure.

Thanks to her perfectly matched kidney, Alcaraz-Jew was able to enroll in a trial led by Stanford immunologist Samuel Strober, MD, that aims to wean transplant patients off immunosuppressive drugs. From the article:

Of the 24 kidney transplant patients with perfectly matched donors who enrolled in the trial beginning in 2000, 16, including Alcaraz-Jew, are living drug free, and three others are working to get off the medications, Strober says. The team is planning to publish a paper summarizing the research results in the near future.

And the photo? That’s Alcaraz-Jew and her husband swimming with whale sharks in Mexico earlier this year.

Previously: Stanford Medicine magazine traverses the immune system, Kidney-transplant recipients party without drugs — immune-suppressing anti-rejection drugs, that is, Might kidney-transplant recipients be able to toss their pills?  and Marked improvement in transplant success on the way, says Stanford immunologist
Photo courtesy of Cynthia Alcaraz-Jew

Ethics, Health Policy, In the News, Medicine and Society, Transplants

Moving the needle on organ donation

Moving the needle on organ donation

For the thousands of people on organ donation lists, news of an available heart, or lungs, or liver can’t come soon enough. But many don’t get that call in time. According to a new feature on The Atlantic’s website, 21 people die waiting for a transplant every day. That works out to more than 7,600 patients every year.

Unfortunately unless you’re personally touched by the issue… you don’t really think about it

Although many people say they support organ donation, in many countries, only a minority actually register as organ donors. (“Unfortunately unless you’re personally touched by the issue, unless you have a child that gets a virus and suddenly needs a new heart, you don’t really think about it,” one expert says in the piece.) It’s a paradox many people in the field are trying to unravel. The reasons they’ve uncovered so far include mistrust of medical professionals: Some people believe that if a medical team finds out that you’re an organ donor, they won’t work as hard to save your life, in order to harvest your organs. And how much TV a person watches can influence how much he or she trusts doctors. One study found that people who watched more of the TV series Grey’s Anatomy were more likely to mistrust doctors and nurses.

Religion also influences the picture, probably because of concepts of bodily integrity in the afterlife. Catholics are less likely to donate their organs, even though the Vatican officially supports organ donation.

So what can be done about the organ shortage? Some groups are working on solutions, as highlighted in the piece:

“What we’re trying to do in New York is move the cultural needle on the issue,” says Aisha Tator, executive director of the New York Alliance for Donation. “Organized tissue donation should be a cultural norm like we did with bike helmet and seatbelt interventions.” Her organization isn’t the only one. Throughout the United States there have been a smattering of recent educational campaigns and studies on their efficacy. Campaigns have targeted the young, the oldnursesDMV employees, and ethnic minorities who tend to donate less than white Americans or white Brits.

Another, more drastic change is to shift the U.S.’s current opt-in system to one that requires people to opt-out. Many experts point to Spain, which has an opt-out system – and one of the highest rates of organ donation. But the logistics of such a system would probably be difficult, best, to implement.

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Biomed Bites, Immunology, Research, Transplants, Videos

Marked improvement in transplant success on the way, says Stanford immunologist

Marked improvement in transplant success on the way, says Stanford immunologist

This is the third installment of our Biomed Bites series, a weekly feature that highlights some of Stanford’s most compelling research and introduces readers to innovative scientists from a variety of disciplines.

“Boost your immune system” is practically a mantra for some health-savvy folks who chug vitamin C or oregano oil (yep!) to ward off errant germs. But sometimes having a weaker immune system is a good thing. Take transplant patients: If their immune system attacks invaders with too much gusto, then the new organ is at risk as well.

But transplant patients don’t want to completely dismantle their immune systems – and that’s where Stanford immunologist Sheri Krams, PhD, comes in. “We want to specifically temper the immune response to that new foreign organ,” Krams says about her work in the video above.

Transplant patients can survive for decades by taking immunosuppressive drugs, yet long-term use of these drugs can weaken bones, muscles and leave patients more vulnerable to infection. But through basic research, this basic transplant conundrum is changing, Krams says:

We’ve made major strides in the field of transplantation in the last few years…  We’re thinking that our research, in a very short period of time, will markedly improve the quality of life for transplant recipients and people that will be receiving stem cell transplants.

Learn more about Stanford Medicine’s Biomedical Innovation Initiative and about other faculty leaders who are driving forward biomedical innovation here.

Becky Bach is a former park ranger and newspaper reporter who now spends her time writing about science or practicing yoga. She’s currently a science writing intern in the medical school’s Office of Communication & Public Affairs.

Previously: Stanford study in transplant patients could lead to better treatmentExtracting signal from noise to combat organ rejection and Kidney-transplant recipients party without drugs — immune-suppressing anti-rejection drugs, that is

Genetics, Pediatrics, Stanford News, Surgery, Transplants

Double kidney transplants leave Hawaii siblings raring to go

Double kidney transplants leave Hawaii siblings raring to go

kidney patients

Two kids; two cases of a rare, often fatal disease; and now, thanks to the work of Lucile Packard Children’s Hospital doctors, two growing kids.

Both Julia Faisca, nearly 10, and Dominic Faisca, 8, suffer from cystinosis, a genetic disease that causes an amino acid — cystine — to build up in the kidney, eye and other places in the body.

The condition retarded the siblings’ growth, and damaged their kidneys. And by May 2013, Julia’s kidneys needed to be replaced. Fortunately, just three months later, she had a new kidney. And the Faisca family received the good news that a kidney was waiting for Dominic while they were flying to California from their home in Hawaii for a routine checkup for Julia.

“We’ve been busy — two kidney transplants in less than a year,” the kids’ mom, Natasha, said in a recent Inside Stanford Medicine story:

“Since their transplants, they aren’t picky eaters anymore,” Natasha said. “I joke with the doctors that the kids are eating me out of the house now. But it’s well worth it.”

Although they’ll always be on medication to protect their new kidneys and will need to return for twice-yearly checkups at Stanford, there’s finally a sparkle in their eyes, Natasha said.

“Dominic and Julia are growing like weeds and it’s really fun to watch them turn into regular kids,” said pediatric transplant specialist Paul Grimm, MD.

Both transplants were conducted by Waldo Concepcion, MD, a specialist in multi-organ transplantation.

Becky Bach is a science-writing intern with the Office of Communications and Public Affairs.

Previously: Baby born with rare, often-fatal kidney disease “doing well” at Packard Children’s Hospital, Contact sports OK for kids with one kidney, new study says and “Delivering hope” at Packard Children’s Hospital
Photo by Norbert von der Groeben

Ethics, Events, Health Policy, Medicine and Society, Public Health, Transplants

Stanford Health Policy forum on organ-donation crisis now available online

Stanford Health Policy forum on organ-donation crisis now available online

The latest Stanford Health Policy Forum, which focused on ways to end our country’s organ-donor shortage, is now available online. More than 100,000 Americans currently need organ transplants, and the panelists discussed a variety of solutions for solving the problem. Among the ideas brought to the table was a compensation system for donors – an option that was also the focus of an article in today’s San Francisco Chronicle.

Previously: At Stanford Health Policy Forum, panelists dig into the issue of organ donationHow can we end the donor organ shortage?, Stanford visiting professor and founder of kidney-exchange program wins Nobel economics prize and One gift saves three young lives 

In the News, Pediatrics, Stanford News, Surgery, Transplants

Parents' heroic effort help 12-year-old daughter receive a new heart and lungs

Parents' heroic effort help 12-year-old daughter receive a new heart and lungs

Fewer than 10 children received a heart-lung transplant in the United States last year. One of them was 12-year-old Katie Grace Groebner, who was diagnosed with pulmonary hypertension in 2008 and given a year to live.

Determined to save their daughter’s life, Katie Gracie’s parents sold their house in Minnesota and most of their belongings and moved to the Bay Area so she could be treated by Jeffrey Feinstein, MD, director of the Center for Pulmonary Vascular Disease at Lucile Packard Children’s Hospital Stanford.

As reported in the NBC Bay Area segment above, the Groebners understandably call Katie’s doctors and nurses “heroes,” but Feinstein says it’s the other way around. “You want to find a hero? Talk about the parents,” he says in the video. “If you look at the amount of work that I did, compared to amount of work Katie Grace’s parents did? There’s no comparison.”

Previously: Living long term with transplanted organs: One patient’s story, Stanford study in transplant patients could lead to better treatment, Anatomy of a pediatric heart transplant and ‘Genome transplant’ concept helps Stanford scientists predict organ rejection

Ethics, Events, Health Policy, Stanford News, Transplants

At Stanford Health Policy Forum, panelists dig into the issue of organ donation

At Stanford Health Policy Forum, panelists dig into the issue of organ donation

Sally Satel, MD, was a practicing psychiatrist with a long history of scholarly research and policy-making in health care when a diagnosis of kidney failure popped her across the line that separates doctors from patients. Without a transplant or dialysis, the 16 percent of function left in her kidneys wouldn’t last long, and she became one of the 60,000 people in the U.S. waiting for a deceased donor kidney. That was in 2004.

One decade later, there are more than 100,000 people on that list. Last year, according to the National Kidney Foundation, just over 14,000 people received donated kidneys, a number that has remained flat since 2007. About 18 people die every day waiting on the list; another 12 are taken off the list daily because they have become too sick to survive transplant surgery. Satel was lucky – an acquaintance volunteered after others had bowed out – and Satel did receive a life-saving kidney transplant.

We need a transparent, safe and ethical system of exchange

From that unexpected experience, Satel wrote a book, ‘When Altruism Isn’t Enough: The Case for Compensating Kidney Donors,” to highlight the shortage. She also became a vocal advocate for changes in the organ donation system that could improve those increasingly dire numbers. This week, she joined a couple of thousand health professionals and interested others at the 2014 World Transplant Congress in San Francisco and also came here to participate in a Stanford Health Policy Forum on organ donation. She spoke alongside David Magnus, PhD, director of the Stanford Center for Biomedical Ethics, and Tom Mone, former president of the Association of Organ Procurement Organizations.

The forum was hosted by the office of Lloyd Minor, MD, dean of the medical school. “Our Health Policy Forums were created to serve as a platform for experts from Stanford and across the globe to discuss important and sometimes controversial medical topics,” he said in a post-event interview. “Our hope is that fostering dialogue on issues of critical importance to our clinicians and patients will take us one step closer to developing solutions.”

At the forum, moderator/Stanford professor Keith Humphreys, PhD, began the conversation by asking Satel what it was like being on the waiting list. “It was extremely difficult,” she answered. “You’re really put in a position of facing years of dialysis (and the wait for a deceased donor kidney) can be five years. In Los Angeles, it’s almost 10 years. The average person doesn’t survive that long.” Asking friends and family isn’t easy either, she said: “You are asking someone to give you a body part.”

Satel has proposed a system of rewards – “not, a check, but some sort of in-kind incentive like a contribution to a charity or a 401k,” she said. “We need a transparent, safe and ethical system of exchange.”

The ethics of such a compensation system is what worries Magnus, who told the audience:

Every time we’ve drawn a line — ‘Here’s what we think is acceptable’ — [it’s] almost always been erased and moved somewhere else… Because of the incessant drumbeat of need, there’s a tendency to move and move the line, and maybe those moves are okay and appropriate, but it makes the slippery slope very, very, very steep. We have had only two absolutes: the rule that prohibits taking organs while people are still alive and the prohibition of payment. Both of these principles are now under attack.

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Ethics, Events, Health Policy, Stanford News, Transplants

How can we end the donor organ shortage?

How can we end the donor organ shortage?

organ donorOur country’s organ shortage is an issue of critical importance – especially to the more than 100,000 Americans currently waiting for an organ transplant. In the words of Stanford’s Keith Humphreys, PhD, “Everyone agrees that 18 people dying each day on transplant waiting lists is unacceptable, but there is fierce disagreement about what to do about it.”

Next week, Humphreys will moderate a panel discussion that delves into the issue. He’ll be joined by three experts – including Stanford bioethicist David Magnus, PhD – who will discuss the effect of the organ donation on our country’s overall health and debate the ethical and practical aspects of proposals to solve the problem. Among the most controversial proposed approach and something that will be vigorously debated: paying people to donate their organs.

The event, part of Stanford’s Health Policy Forum series, will be held on July 28 at 11 AM at the Li Ka Shing Center for Learning and Knowledge, in room LK130. For those local readers: It’s free and open to the public, but space is limited. More information can be found on the forum website.

Previously: Students launch Stanford Life Savers initiative to boost organ donation, Full-length video available for Stanford’s Health Policy Forum on serious mental illness, Stanford forum on the future of health care in America posted online and Stanford Health Policy Forum focuses on America’s methamphetamine epidemic
Photo by Mika Marttila

Ethics, In the News, Research, Transplants

Physicians more likely to become organ donors, Canadian study finds

Physicians more likely to become organ donors, Canadian study finds

When receiving advice from a physician, one might wonder what the doctor would choose for him- or herself. Recently we discussed here a study on doctors’ preferences for their own end-of-life care. Now, a study published in the Journal of the American Medical Association has reported on physicians’ views and behavior surrounding their own organ donation.

As a news@JAMA piece reports on the Canadian study, physicians are nearly 50 percent more likely than non-physicians to register as an organ donor. More from the piece:

Despite waiting lists for organs in many countries, the percentage of individuals registered in national organ donation registries in most countries is below 40%. The United States fares a bit better than average, with 48% of adults registered as organ donors.

Concerns about organ donation have led to lower-than-average rates of registration in Ontario, Canada, where only about 25% of adults have registered. Currently, there are more than 1500 people on transplant waiting lists in Ontario.

Study author Alvin Ho-ting Li, BHSc, a PhD candidate at Western University in Ontario, Canada, discusses the study’s purpose and findings further in a Q&A section of the piece.

Previously: More on doctors and end-of-life directivesStudy: Doctors would choose less aggressive end-of-life care for themselvesStudents launch Stanford Life Savers initiative to boost organ donation and Family ties: One sister saves another with live liver donation

Pediatrics, Stanford News, Transplants

How mentorship shaped a Stanford surgeon's 30 years of liver transplants

How mentorship shaped a Stanford surgeon's 30 years of liver transplants

Carlos Esquivel - OR_560

This year, pediatric liver transplant surgeon Carlos Esquivel, MD, PhD, is celebrating the 30th anniversary of his first liver transplant and his long career as a innovator of transplantation for tiny, fragile babies. When I was researching a story to mark the milestone, I wondered what led Esquivel to perform his very first transplant back in 1984.

As my story describes, a high-powered mentor shaped Esquivel’s career:

Near the end of his surgical residency at UC Davis, [Esquivel] realized that his planned career in vascular surgery would not challenge him enough. He sought a fellowship with the University of Pittsburgh’s Thomas Starzl, MD, PhD, who had performed the first successful human liver transplants a few years before and was refining the difficult, esoteric procedure. Soon, Starzl guided Esquivel through a transplant on a man with acute liver failure who had come to the hospital in a deep coma. The operation went well. Two days later, the patient awoke.

“Once I saw that — somebody who was at death’s doorstep waking up — it was unbelievable,” Esquivel said. “I never looked back.”

The background to that first surgery, which didn’t make it into my story, is quite interesting. When Esquivel arrived in Pittsburgh, Starzl’s team was conducting 300 liver transplants per year, sometimes several in a day. Esquivel was one of 40 fellows vying to learn the procedure. Surgeons operated with crowds of these apprentices peering over their shoulders.

Liver transplant was tricky. Because the liver performs many unique functions, including filtering toxins and secreting essential proteins into the blood, the patients were very ill.

“They’re some of the sickest patients in the hospital,” Esquivel told me. “When the liver doesn’t work, the blood doesn’t clot.” During transplant, patients could lose significant amounts of blood.

Esquivel was fortunate: As he described it, Starzl quickly took a liking to him. Many fellows were in Pittsburgh for a long time without being allowed to operate, but just three months after Esquivel arrived, Starzl said “Carlos, you are going to do your first liver transplant.”

Esquivel’s first-time jitters were mild until he learned that his patient was also a surgeon, a young surgical resident who had contracted acute hepatitis through a needle-stick injury. The man’s liver was failing fast. He came to the hospital on a respirator, in a deep coma. Despite Esquivel’s anxiety the procedure went smoothly – so well that, when the patient woke up, he was hungry.

“Even still hooked up to the respirator, he was asking what there was for breakfast,” Esquivel said, adding the comment I quoted above about his amazement at seeing the awakening of someone who had been at death’s doorstep. With Starzl’s guidance, Esquivel went on to tackle the toughest liver transplants with aplomb, eventually saving the lives of many babies and young children whom other surgeons turned away.

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