Published by
Stanford Medicine

Category

Transplants

Patient Care, Stanford News, Transplants

Living long term with transplanted organs: One patient’s story

Living long term with transplanted organs: One patient's story

Organ transplant has been a life-saving option for decades now, but its science is still evolving. One of the most pressing questions is why some people with transplants surpass the standard expectations. I recently spoke with David Weill, MD, director of Stanford’s Center for Advanced Lung Disease, and Bruce Reitz, MD, the Stanford physician who performed the first successful adult heart-lung transplant in 1981, about one patient who has definitely exceeded expectations.

Steve Rasmussen was a 28-year-old Santa Cruz resident when cystic fibrosis finally claimed his lungs in 1988. The best solution then was a heart-lung transplant. Twenty-six years later, Rasmussen is now celebrating the 25th anniversary of his transplant – and his remarkable record of transplant longevity. (Earlier this year, Stanford’s lung transplant program hit a milestone of its own, marking its 500th adult transplant.)

As I wrote in my article about why Rasmussen has survived so long:

Reitz knows that Rasmussen’s transplant longevity is unusual. He thinks that it might be related to some kind of difference in Rasmussen’ immune system. Another possibility is the combination of a particular donor and a particular recipient. “Frankly, we don’t have any real clue what it is about the long-term survivors that has given them this tremendous gift,” Reitz said.

There’s more in the video above.

Previously: Life-threatening diagnosis leads to powerful friendship for two California teensA story from the edge of medical possibility: Operatic soprano sings after double lung transplant and Celebrating the 30-year anniversary of the world’s first lung-heart transplant

Cardiovascular Medicine, Genetics, Research, Stanford News, Stem Cells, Transplants

Stem cell medicine for hearts? Yes, please, says one amazing family

Stem cell medicine for hearts? Yes, please, says one amazing family

SM image of bird and heartRecently, a medical situation with one of my children had me gnawing my fingernails and laying awake at night waiting for scary-sounding test results. Thankfully, my growing anxiety was relieved after several days by a reassuring phone call from our doctor. Unfortunately, the health concerns of the stars of my most recent magazine story - the Bingham family of eastern Oregon – are not so easily dismissed.

Three of the five Bingham children have a heart condition called dilated cardiomyopathy; two of the three (14-year-old Sierra and 10-year-old Lindsey) have already had heart transplants at Lucile Packard Children’s Hospital Stanford. Their parents, Jason and Stacy, were gracious enough to share their family’s story with me for my article in our most recent issue of Stanford Medicine magazine.

Heart transplants are life-saving, but they come with a lifetime of medication and monitoring. Many physicians feel that cardiac medicine is on the cusp of a revolution – one in which the power of stem cells will be harnessed to help hearts heal themselves, or perhaps even to grow new, perfectly matched organs for transplant. The California Institute for Regenerative Medicine has awarded more than $120 million to pursue potential therapies. No matter how fast any advances occur, however, they can’t come soon enough for the Bingham parents, who are now anxiously monitoring 5-year-old Gage’s battle with the same disease that led to his sisters’ transplants.

At the same time, physicians at the Stanford Center for Inherited Cardiovascular Disease are searching to find the (presumably) genetic cause for the Bingham family’s heart problems through gene sequencing while researchers in the laboratory of Stanford cardiologist and director of the Stanford Cardiovascular Institute Joseph Wu, MD, PhD, work to create induced pluripotent stem cells from the family to better understand the molecular basis of their illnesses.

I’ve been thinking a lot about Jason and Stacy this past week while I faced my own fears for my daughter. I cannot comprehend how strong they have to be for their children. And, although I work daily with many amazing doctors and researchers, I have to say that Jason and Stacy (and other parents like them) are my true heroes.

Previously: Mysteries of the heart: Stanford Medicine magazine answers cardiovascular questions, At new Stanford center, revealing dangerous secrets of the heart and Packard Children’s heart transplant family featured tonight on Dateline and
Illustration, which originally appeared in Stanford Medicine, courtesy of Jason Holley

Cardiovascular Medicine, Research, Stanford News, Technology, Transplants

Mysteries of the heart: Stanford Medicine magazine answers cardiovascular questions

Mysteries of the heart: Stanford Medicine magazine answers cardiovascular questions

spring14_magazine-coverThe heart is a paradoxical organ. It declares its presence with that distinctive thump thump, yet its moment-to-moment condition is really hard to decipher. But as I learned while editing the just-published Stanford Medicine magazine special report “Mysteries of the heart,” new technologies and research are making it easier to assess heart health and diagnose disease. With heart disease the No. 1 cause of death worldwide, that’s good news.

The issue, published during American Heart Month, was supported in part by the Stanford Cardiovascular Institute. Among its contents:

  • A change of heart“: An interview with former vice president Dick Cheney on having “virtually everything done to me that you could do to a heart patient,” culminating with a transplant.
  • Fresh starts for hearts“: A feature on using stem cells to revolutionize cardiac care, and a family for which new treatments can’t come soon enough.
  • The ultramarathoner’s heart“: Visionary computer designer Mike Nuttall’s exploits as an ultramarathoner, despite having severe heart disease (online only).
  • Hiding in plain sight“: The story of a man born with high cholesterol — a surprisingly common but hidden and deadly condition.
  • Switching course“: A piece detailing the untangling of a heart surgery that saves babies, but threatens their lives in adulthood.
  • The heart gadgeteers“: A report on the new wave of heart- and fitness-monitoring devices, and why it’s hard to integrate them into the medical system.
  • Easy does it“: An article on an alternative to open-heart surgery to replace aortic valves.
  • Dear Dr. Shumway”: Catching up with a kid who in 1968 wrote to transplant pioneer Norman Shumway, MD, for advice — on his frog heart transplant.

The issue also includes articles on the use of big data in medicine, which will be the focus of the Big Data in Biomedicine conference May 21-23 at Stanford.

Previously: From womb to world: Stanford Medicine Magazine explores new work on having a babyFactoring in the environment: A report from Stanford Medicine magazine and New issue of Stanford Medicine magazine asks, What do we know about blood?
Illustration by Jason Holley

Cardiovascular Medicine, Stanford News, Transplants, Videos

A physician shares his story of being diagnosed with amyloidosis

A physician shares his story of being diagnosed with amyloidosis

Long before Kevin Anderson, MD, was diagnosed with amyloidosis, a disorder in which abnormal proteins build up in tissues and organs, his physical health began deteriorating. The most noticeable change was his increased difficulty in walking up the stairs to the hospital room where he practiced. In the above video, Anderson shares his story of working with Ron Witteles, MD, co-director of the Stanford Amyloid Center, to receive a heart transplant and get his health back on track.

Via Stanford Hospital & Clinics Facebook page
Previously: Survey shows Americans need a refresher course on heart health, Ask Stanford Med: Answers to your questions about heart health and cardiovascular research and Ask Stanford Med: Cardiologist Jennifer Tremmel responds to questions on women’s heart health

Public Health, Stanford News, Transplants, Videos

Students launch Stanford Life Savers initiative to boost organ donation

Students launch Stanford Life Savers initiative to boost organ donation

In the United States, approximately 18 people die each day waiting for a life-saving organ transplant, and every 13 minutes a new name is added to the national waiting list. Those who become organ donors have the opportunity to save up to eight lives and reduce the shortage of organs available for transplant.

To spread the word about how organ donors can save lives, students in a Stanford political science class launched a new public-health awareness campaign. While developing the initiative, called Stanford Life Savers, students polled their peers to understand public perception about organ donation. (They found fear was the number one reason people don’t register as donors; religious concerns also sometimes came into play.) As noted in a Stanford Report story published today, conducting the survey was eye-opening for students:

Nicole DeMont, a master’s student in communication, said she was surprised to discover how much misinformation exists. “It is important that people know the truth about organ donation so they’ll be more willing to register,” she said.

The more people learn, the more likely they are to support organ donations, she said. It helps that now one can register online to make organ donations – in the past in California, one could only do so at the Department of Motor Vehicles, DeMont added.

DeMont and her classmates created more than a dozen videos, such as the one above, to address individuals’ concerns and encourage more people register as organ donors.

Previously: Closing the racial gap for life-saving transplants, Record number of organ transplants saves five lives in a dayFilm about twin sisters’ double lung transplants and battle against cystic fibrosis available online and Pediatric social worker discusses the emotional side of heart transplants 

Genetics, Microbiology, Research, Stanford News, Transplants

Stanford study in transplant patients could lead to better treatment

Stanford study in transplant patients could lead to better treatment

To keep a patient healthy following an organ transplant, doctors must prescribe the right balance of immune-system-supressing drugs: The medications need to be strong enough to prevent rejection of the foreign body but not leave the immune system at risk for infection. Now, a study by Stanford scientists has pinpointed a little-known virus that spreads when these immunosuppressant drugs take effect. The anellovirus, first identified in 1997, could be a barometer of immune system strength, thereby informing more precise and less reactive treatment for transplant recipients.

Lead author Stephen Quake, PhD, and collaborators isolated specific DNA fragments floating in the blood plasma of 96 heart and lung transplant patients using a technique of genomics, of which Quake is a pioneer. The team studied how the drugs affected the body’s microbiome, or collection of bacteria, fungi and viruses.

As described in a release, the researchers found that “lower levels of anellovirus suggest a stronger immune system and an elevated risk of organ rejection, while higher levels of anellovirus suggest a weaker immune system with a corresponding shift in risk toward vulnerability to infection.”

Hannah Valentine, MD, professor of cardiovascular medicine and senior associate dean for diversity and leadership at the School of Medicine, remarked, “These findings suggest an effective tool to individualize the monitoring and, ultimately, the treatment of rejection. In the future, this could allow us to safely lower the doses of immunosuppressive drugs patients receive, thereby avoiding devastating side effects.”

Previously: Extracting signal from noise to combat organ rejectionWhole-genome fetal sequencing recognized as one of the year’s “10 Breakthrough Technologies” and New techniques to diagnose disease in a fetus

Research, Stanford News, Transplants

Extracting signal from noise to combat organ rejection

Extracting signal from noise to combat organ rejection

Last year, 28,000 patients in the United States received organ transplants. Because the body’s immune system is programmed to recognize a transplanted organ as foreign and attack it, the organ is often rejected.

Although immunosuppressant drugs such as cyclosporine act to prevent organ rejection, and better knowledge of molecular mechanisms of rejection has improved donor-recipient matching, organ rejection is still a frequent problem. For instance, 15 to 20 percent of adults who received kidney transplants between 2005 and 2009 experienced acute organ rejection within five years, according to statistics from the Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients.

To improve both prediction and treatment methods, Purvesh Khatri, PhD, harnessed the power of multiple data sets to find the common links among thousands of organ rejection cases. Khatri is an acting assistant professor of medicine at the Stanford Center for Biomedical Informatics Research; among his collaborators were co-senior authors Minnie Sarwal, MD, PhD, of the California Pacific Medical Center, and Atul Butte, MD, PhD, associate professor of pediatrics at Stanford and director of the Center for Pediatric Bioinformatics at Lucile Packard Children’s Hospital. In a paper published today in the Journal of Experimental Medicine, Khatri and his colleagues found that the same 11 genes were highly expressed in four types of rejected organs - heart, lung, liver, and kidney.

By examining this 11-gene signature in patient biopsies taken six months after transplants, the researchers could predict the risk of organ rejection after two years. This finding could have implications for more targeted treatment of patients at risk for organ rejection.

In addition, Khatri and his team searched the medical literature for existing drugs that might target any of the 11 genes involved in rejection. They came up with two drugs, atorvastatin and dasatinib, which are currently used for the treatment of high cholesterol and cancer, respectively. To find out whether these drugs could effectively prevent organ rejection, they teamed up with colleagues at the Stanford Cardiovascular Institute to test the drugs on a mouse heart-transplant model. They found that both atorvastatin and dasatinib increased survival rates for mice after heart transplants.

In a testament to the power of publically available electronic medical records, the team obtained data on more than 2,500 kidney transplant patients from University Hospital in Leuven, Belgium. Sixty percent of these patients were receiving statin treatment for heart-related conditions, and these patients had a 30 percent lower risk of organ rejection. This suggests that statins may be effective as a routine anti-rejection treatment. “You’ve been giving this drug to these patients for other reasons and their grafts are surviving longer,” Khatri, lead author of the study, told me. “So you might as well start making it part of the standard protocol.”

Because atorvastatin and dasatinib are already approved for other uses by the Food and Drug Administration, the time between laboratory studies and approval for patients can be shortened. The innovative approach taken in this study - to use large data sets and computational methods to extrapolate common genes involved in medical conditions, and then to predict new treatments – is likely to become more common. As Khatri, a computer scientist, explained, “Despite all the heterogeneity in the data, we can find the signal that can be used for predicting drugs, and then we can use electronic medical records to see if the drug would actually work before we do the experiment.”

Molly Sharlach is a writing intern in the medical school’s Office of Communication & Public Affairs. She is a student in the Science Communication Program at the University of California-Santa Cruz.

Previously: Shushing T cells promotes acceptance of stem cell therapies, say Stanford researchers and Biomarker can predict graft-versus-host disease in men after transplants from women donors

Cancer, Health Disparities, In the News, Stem Cells, Transplants

Closing the racial gap for life-saving transplants

Closing the racial gap for life-saving transplants

The already-tricky process of finding a match for a stem cell or bone marrow transplant proves more elusive for people with a diverse heritage. A Washington Post article today puts the numbers in perspective: “When all of humankind’s relevant genes are considered, there are 10 billion possible combinations.”

With a focus on the genetic, cultural and religious issues surrounding transplantation, the piece spotlights two Stanford affiliates who have struggled to find life-saving donors. A match for psychology professor Nalini Ambady, PhD, was recently discovered after a difficult search. Meanwhile, Nina Louie, a former Stanford undergraduate of Chinese and Thai descent, still needs a bone marrow and peripheral blood stem cell transplant to treat her advanced lymphoma.

Read more from the Post about Louie’s friends’ campaign to save her life in the face of 1-in-20,000 odds of success, and how they and organizations such as Be The Match raise awareness about the importance of registering to donate, especially among people of minority-group backgrounds.

Previously: Study highlights social media’s potential as a public-health tool, Stanford faculty and students launch social media campaign to expand bone marrow donor registry and Valuing bone marrow

Pediatrics, Stanford News, Surgery, Transplants

Record number of organ transplants saves five lives in a day

Record number of organ transplants saves five lives in a day

For most of us, a change of heart takes some time. But for the team of Stanford medical professionals at Lucile Packard Children’s Hospital, a change of heart – plus two livers and two kidneys – can happen in less time than it takes to ease into the workweek.

Five organ transplants in twenty-four hours is no typical feat for this Stanford hospital. Though medical teams at Packard Children’s Hospital perform about 70 liver and kidney and 15 heart transplants a year, they had never attempted this many organ transplants in a single day.

Since donor organs are scarce, medical teams must be ready to perform an organ transplant (or five) at a moment’s notice. In the most recent issue of Inside Stanford Medicine, Robert Dicks explains the extraordinary circumstances and determination leading to this surgical marathon. From the piece:

“This was the ultimate demonstration of the passion we have for healing children through transplant,” said [Waldo Concepcion, MD, professor of surgery], who once led five kidney transplants in two days. “Care teams throughout the hospital immediately got into it. Experience matters, and they all put in lots of extra hours in order to ensure everything would go smoothly.”

Concepcion also noted that other surgeons postponed scheduled cases to make room for the transplants. “It was impressive but not surprising,” he said. “Everyone was thrilled to see so many transplants save so many lives in such a short period of time.”

Holly MacCormick is a writing intern in the medical school’s Office of Communication & Public Affairs. She is a graduate student in ecology and evolutionary biology at University of California-Santa Cruz.

Previously: The mystery surrounding lung transplant ratesFilm about twin sisters’ double lung transplants and battle against cystic fibrosis available online and Pediatric social worker discusses the emotional side of heart transplants
Photo of members of the transplant teams by Robert Dicks

Transplants, Videos

Film about twin sisters’ double lung transplants and battle against cystic fibrosis available online

Film about twin sisters' double lung transplants and battle against cystic fibrosis available online

The Power of Two,” a documentary offering an intimate look at the lives of twin sisters Anabel Stenzel and Isabel Stenzel Byrnes and their battle with cystic fibrosis, will be available on the web for viewers in the United States tomorrow through June 30.

After undergoing aggressive treatments during childhood, the siblings graduated from Stanford in 1994 and completed their graduate degrees at University of California-Berkeley. They received three sets of transplant lungs between them and co-wrote a memoir chronicling their transformation from illness to wellness made possible by organ donors. Their miraculous story inspired the award-winning film. Today, the pair work at Stanford’s Lucile Packard Children’s Hospital.

The documentary is being streamed online in recognition of Cystic Fibrosis Awareness Month and to raise awareness for organ donation and transplantation.

Previously: Meet the filmmakers behind “The Power of Two” and Living- and thriving- with cystic fibrosis

Stanford Medicine Resources: