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Cardiovascular Medicine, Patient Care, Stanford News, Technology, Videos

“Liberated from LVAD support”: One patient’s story

“Liberated from LVAD support”: One patient’s story

One of the first things I noticed about Donna Jackson — 68 years old when I met her in 2011 — was her decisive nature. She had a schedule filled with activity, and regardless of how many people (many of her children, grandchildren, great-grandchildren, in-laws and friends live very near at hand) came to visit in her modest home in Central California, she was a certain force of calm. She was also someone who did not like restrictions on what she could do.

Back then, she was just a few months out from surgery at Stanford Hospital to implant a mechanical pump, a left ventricular assist device or LVAD, on her heart. She knew it had saved her life, but she chafed at the battery, back-up battery and controller she had to wear at all times. Before the surgery, she had been a regular at a water aerobics class, and she loved to swim with her grandchildren. Even in those early months, Jackson was leaning on her Stanford doctors to find a way to get her back in the water. She asked her cardiologist, Dipanjan Banerjee, MD, to consider allowing her to swim in a wetsuit.

Banerjee did her one better. It had become apparent to him that she could be one of that small percentage of LVAD recipients whose heart recovers after the rest that the LVAD gives it and who no longer need the device. (He had been waiting, he said, to find a patient “who can be liberated from LVAD support.”) By Spring 2013, a little less than three years after her LVAD implantation, Banerjee and Jackson’s surgeon, Richard Ha, MD, put Jackson in an even smaller percentage. She became the first person to have her LVAD deactivated by catheter in the most minimally invasive approach yet.

The challenge set by Jackson for her Stanford team — and its groundbreaking procedural response — appears today in the August issue of the Annals of Thoracic Surgery. The lead author of the paper is Sanford Zeigler, MD, a cardiothoracic surgery resident.  Ha, surgical director of the hospital’s Mechanical Circulatory Support Program is the paper’s senior author, and Banerjee, medical director of Mechanical Circulatory Support Program, is a co-author. As they explain in the paper, Jackson, nearing 71,  was a high surgical risk for complete removal of the implant — that would have required them to crack open her ribs again — a procedure that’s followed typically by a long and sometimes painful recovery.  So, her doctors instead threaded a slim plastic tube through a small incision to her femoral artery in the groin and up to her aorta, allowed them to plug the flow of blood to the LVAD. Then, they cut, cleaned and capped the wiring powering the LVAD so it no longer emerged from an opening in her abdomen. (The LVAD remains inside Jackson’s chest.)

The new catheter-based deactivation of the LVAD has value beyond Jackson’s way of life, as the paper explains. She inspired the team to begin research on how to predict which LVAD patients might be like her and reach a point where they no longer need the LVAD. “If we can find out which patients are going to recover sooner, we can be more aggressive with them so they can be liberated from the LVAD,” said Banerjee, “and many of these patients will not want or be able to tolerate a complete removal of the LVAD.”

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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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Cancer, Dermatology, Events, Public Health, Stanford News

Free skin cancer screening being held Saturday

Free skin cancer screening being held Saturday

sunbatherScreening for skin cancer is advised for people with many moles or atypical moles, fair skin or a history of excessive sun exposure, a personal history of skin cancer or precancerous spots, or a parent or sibling who has had skin cancer. Each year, Stanford dermatologists offer a free screening for those in the local community, and this year’s event – being held tomorrow, May 31 – will offer more than the experienced eyes of skin clinicians.

Understanding that many people have concerns about one particular spot, the organizers are debuting a form of fast-track evaluation for just such concerns. During the Spot Check service, clinicians will use and study a new Stanford-developed smartphone-based device. As Justin Ko, MD, co-chief of medical dermatology at Stanford Hospital & Clinics, explained to me, “The device allows a user to capture clinical images of a skin lesion with their smartphone previously possible only with specialized, expensive devices typically used by dermatologists. We’ll be doing some studies to validate what we believe may well ‘democratize’ ability to capture and send medical-quality images of skin lesions by making this technology accessible and easy to use.”

The screening event (.pdf) will also include information on SUNSPORT, a collaboration of the Stanford Cancer Institute, the medical school’s Department of Dermatology, Stanford Athletics, and Stanford Hospital & Clinics, which provides student-athletes with information about their heightened risks for sun-related skin damage and works with the teams’ coaches and athletic trainers to reinforce skin-protection practices on a daily basis.

For local readers: The event runs from 8-11 AM at the Stanford Medicine Outpatient Center in Redwood City. Call (650) 723-6316 for more information.

Previously: Skin cancer images help people check skin more often and effectively, Working to protect athletes from sun dangersStanford clinic addresses cancer-related skin issuesAs summer heats up take steps to protect your skin and Man’s story shows how cancer screenings saves lives
Photo by Tom Godber

Cancer, Patient Care, Stanford News, Videos

When a rash isn’t just a rash: A patient’s battle with mycosis fungoides

Paul Raffer, MD, is a doctor, accustomed to avoiding the kind of leap that non-physicians often make by assuming common symptoms are something far more serious. So he saw the rash that appeared on his body a few years ago as nothing to worry about. The irony, of course, is that the rash turned out to be something quite serious: mycosis fungoides, a form of blood cancer that shows itself in the skin. It’s a common form of cutaneous lymphoma but it is considered rare, appearing at a rate of 3.6 cases per million people each year.

Raffer’s belief that the rash was benign changed, as he told me for this story, when that rash spread over his entire body and began to itch continuously. “I stopped being able to sleep. My skin started flaking and peeling. I also started getting very thick plaques, with lesions all over my back, my abdomen and my arms. But the worst part was the itchiness. And there was nothing that worked very well to control it.”

Because mycosis fungoides is rare, specialists are not plentiful. But what encouraged Raffer, who lives in Arizona, was when his doctor instructed him: “Go to Stanford. See Dr. Youn Kim. If not one of the world’s experts, she is certainly the West Coast guru for what you have.”

Once Raffer was evaluated at the Stanford Multidisciplinary Cutaneous Lymphoma Clinic, he received another blow: His condition was at Stage IV. (Mycocis fungoides can progress quite slowly, but Raffer’s had advanced to an aggressive form called Sézary syndrome.) “Your insides fall out when you hear Stage IV of anything,” Raffer said. But, three years later, Raffer is healthy again.

Events, Global Health, Stanford News, Women's Health

2014 Stanford Women’s Health Forum to focus on global health

2014 Stanford Women's Health Forum to focus on global health

I’ll be spending next Wednesday afternoon at the Fifth Annual Stanford Women’s Health Forum, where the best thing about the event is also its most frustrating: There are a lot of good speakers. How does one choose between hearing about the power of training adolescent girls to say no to unwanted sexual advances, and learning from Shuchi Anand, MD, MS, a Stanford nephrologist and epidemiologist who tracks gender-related risk factors for chronic disease in developing regions?

Such difficult choices have been typical of the abundant schedule for each year’s forum, organized by the Stanford WDSM Center, previously known by its longer title, the Stanford Center for Health Research on Women and Sex Differences in Medicine. WSDM selects a theme for the forum and doubles the opportunities for audiences by offering two talks each hour. Last year’s forum focused on breast cancer and featured keynote speaker Susan Love, MD, a breast cancer specialist and leukemia survivor. This year’s theme is global health, and the impressive list of speakers begins with Ruth Levine, PhD, director of the global development and population program at the William and Flora Hewlett Foundation.

In addition to the talks, whose moderators include Jesse Draper, creator and host of “The Valley Girl Show,” the event features  informational presentations on the Stanford Health Library, Stanford Hospital’s Aging Adult Services and Navigation Services programs, lung CT screening, new breast cancer screening technologies, peripheral artery disease diagnostics, and the medical application of the latest in immersive 3-D technologies.

The free event is held at the Arrillaga Alumni Center on the Stanford campus, and those who are interested can register here. For those who can’t make the event, WSDM will post videos of its forum on its YouTube channel.

Previously: Empowerment training prevents rape of Kenyan girls, Videos from Stanford 2013 Women’s Health Forum available online and At Stanford event, cancer advocate Susan Love talks about “a future with no breast cancer”

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

Ask Stanford Med, Autoimmune Disease

A closer look at the autoimmune disease vasculitis

When various forms of news media last week reported the cause of death of Harold Ramis, the writer/director/actor, as complications from the “rare autoimmune disorder vasculitis,” I can promise you there were many people who read that and said, “Huh?” for very personal reasons. These are people who, like me, knew that these reports weren’t quite right. Vasculitis is actually a family of at least 15 forms of this disease group and one not so rare when all those who have some form (perhaps as many as 3 million) are added together.

Research and clinical trials on vasculitis have been carried on in a handful of centers around the world. One long-time investigator in this area, also a teacher and clinician, is here at Stanford: Cornelia Weyand, MD, PhD, division chief of immunology and rheumatology. Wayand’s e-mail box was flooded last week, so we asked her to answer some basic questions here about the vasculitis family.

I understand the vasculitides are a family of diseases. Is there something all forms have in common?

A diagnosis of vasculitis means that there is inflammatory disease in the blood vessels.

All organ systems in the body have blood vessels. Therefore, all organ systems can be affected by vasculitis. Blood vessels provide oxygen and nutrients to the tissues. Inflamed blood vessels have a tendency to become blocked. In that case, the tissues do not get blood supply anymore, causing serious complications. In some cases, the inflamed blood vessel bursts, causing life-threatening bleeding. This complication is particularly serious if the body’s largest blood vessel, the aorta, is affected. A leak in the aorta is incompatible with life.

What insights into vasculitis have we gotten from research?

My research team has been involved in vasculitis research for the last decade. We have been trying to find answers to the questions most patients ask at one point in the course of their disease:

A. Why did I get this disease?

Vasculitis results from a faulty immune response. Cells of the immune system attack the blood vessel and cause tissue injury. The blood vessel responds to the attack by either closing up or by rupturing. We have been able to identify the immune cells that initiate and sustain vasculitis. Remarkably, cells that induce disease are identical to cells that protect the body. We have also learned that blood vessels have specialized sensor cells in them that keep a dialogue with the immune system and start the inflammation.

B. How can my disease be treated or prevented?

We cannot prevent vasculitis, but since the disease takes a course of flares and remission, we may be able to prevent the next disease flare.

Vasculitis is treated by suppressing the immune system. One of the most effective drugs is cortisone. Some patients need it in large doses and we are very cognizant of side effects.

We have devoted our research effort to develop new means of therapy. To accomplish that goal, we have developed a system in which we can induce vasculitis and then test new therapies. This system involves the transplantation of human blood vessels into mice. If such mice are supplied with immune cells from our patients, vasculitis develops in the engrafted blood vessel. We can treat that inflammation in the mice and can easily take a biopsy from the blood vessel to check what we have achieved and how therapy actually works.

C. How do you know whether my disease is active or not?

This is one of our greatest challenges as we take care of our patients. We cannot just go and take a tissue biopsy of our patients every time they come and see us. We have a research project in place which is aimed at developing biomarkers of vasculitis in a blood sample. We isolate out the immune cells of the patient and, by applying cutting edge technology, we assess these immune cells to get information how likely or unlikely these cells would cause inflammation.

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Cardiovascular Medicine, Orthopedics, Sports, Stanford News

Following treatment for thoracic outlet syndrome, Stanford athlete dives back to life

Following treatment for thoracic outlet syndrome, Stanford athlete dives back to life

diver2

Those of us who spend hours on a keyboard each day – especially ones that torque our wrists and thumbs out of their natural stance – may have already experienced the pain and stiffness that can come from asking our body parts to do the same thing over and over again. And such is the case for athletes, as well.

When Taylor Sishc arrived at Stanford as an All-American high school diver, with years of devoted practice responsible for that achievement, he found himself with a similar repetitive use injury. He had severe weakness in his left arm, and the trick – as with many medical challenges – was to figure exactly what was going on and how to fix it.

As a member of Stanford’s elite diving team, Sishc had access to expert coaches, trainers, therapists and doctors, including vascular surgeon Jason Lee, MD. As I wrote in an Inside Stanford Medicine article:

Lee, an associate professor of surgery at the School of Medicine, had his suspicions about what the problem was: Sishc might have thoracic outlet syndrome, a condition often seen in athletes but also found in people who use their arms in a repetitive motion, which can lead to the compression of nerves or blood vessels, or both, in the thoracic outlet — an area bounded by the base of the neck and the first rib.

Diagnosis of thoracic outlet syndrome, also known as TOS, is not straightforward. “There’s no one blood test or radiographic test or physical exam finding that gives you that ‘aha’ moment,” Lee said. “It’s a combination of positive and negative tests.”

Sishc had been a gymnast since childhood and a serious competitive diver since he was 13. By the time he reached Stanford, he had been lifting his arms over his head in a similar motion for years — exactly the kind of long-term overuse that creates thoracic outlet syndrome…

My story details how Lee’s hunch was correct and how the therapies Sishc received slowly but surely got him back on the diving board in championship form.

Previously: ‘Snorkel’ stents create lifeline to organs in method of treating complex abdominal aortic aneurysms
Photo by Todd Holland

Medical Education, Stanford News, Surgery, Technology

SICKO web-based game helps surgeons practice decision making

SICKO web-based game helps surgeons practice decision making

Sicko

Simulation in various forms has become an accepted form of medical education, especially for those techniques needed for surgical procedures. It’s obviously safer to practice on a mannequin than a real person. But one Stanford physician, surgeon James Lau, MD, was struck by a distinct absence of similar practice techniques for pre-surgical decision-making – those questions whose answers help a doctor decide whether to conduct a surgery. In fact, Lau knew, the only time a doctor is tested on those non-surgical skills is during the board certification process that takes places years into actual practice.

With the help of a grant designed to nurture innovative approaches to medical education, Lau collaborated with a Stanford medical student and a third-year Stanford surgical resident to build upon and expand the technology behind last year’s Stanford CME hit, Septris, a web-based game designed to teach doctors how to better identify and treat sepsis. The new game, SICKO (Surgical Improvement of Clinical Knowledge Ops), aims to duplicate what doctors face every day: the pressure of time and multiple patients.

But, to Lau’s goal of improving patient safety, none of SICKO’s patients are real – and practice might make perfect. I explain more in an Inside Stanford Medicine story today.

Previously: A conversation about digital literacy in medical educationThe data deluge: A report from Stanford Medicine magazine and Can battling sepsis in a game improve the odds for material world wins?
Image from Zak Akin

Cancer, Stanford News, Videos

“Hey now, hey now, the chemo’s done:” Stanford oncology nurses show support for patients in song

"Hey now, hey now, the chemo's done:" Stanford oncology nurses show support for patients in song

Even before he began radiation and chemotherapy, Stanford Hospital & Clinics patient Kenneth Olson had endured a difficult surgery, which included two skin grafts, to remove a tumor that had grown from his right nostril up into the lining of his brain. “The doctor said early on it was not going to be a picnic – and it wasn’t,” said Olson. He was diagnosed on a Tuesday, operated on by Friday and introduced quickly to the remainder of his treatment.

Olson received an ad hoc diploma from the radiation group shortly after surgery. But when he finished chemo, several employees in the Infusion Center had something a bit more extravagant in mind – a Radio City Music Hall Rockettes-style version of the 1963 hit “My Boyfriend’s Back,” with words altered to the occasion. Hospital videographer Todd Holland arranged to be on hand recently for that performance.

“The chemo’s done and you won’t be coming back! Hey now, hey now, the chemo’s done!” is the opening line. And it’s been a hit since its debut.

“It started with one patient, whose chemo had been difficult for her,” Chris Tucker, RN, who also teaches a how-to class on chemotherapy for SHC patients. told me. “She said, ‘I want you all to sing for me.’ We didn’t know what we were going to do, so we just sang, ‘The chemo’s done, the chemo’s done!’ We did that for a few other patients.” A few months later, a patient’s son, who happened to be a singer/songwriter, offered to write them some words for a song whose melody they all knew. “He wrote lyrics. We didn’t tell his mom and we came in and sang. That version had a few more verses to it and it was very specific to her, so over time we shortened it down and that’s become our generic chemo song,” Tucker said.

Singing the song is way for the staff to rally around a patient, Tucker said, and often other patients will clap, too. “We love the work we do,” she said. “We wouldn’t be oncology nurses if we didn’t love this kind of work. To be able to stand alongside someone when they’re going through what they perceive as the most difficult phase of their lives, to do something uplifting and fun, is something positive for them we can do. As soon as someone hears we’re doing the chemo song, everybody drops what they’re doing.”

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