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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.”

Image of the Week

Image of the Week: aKNITomy

Image of the Week: aKNITomy

Vermont-based artisan Emily Stoneking admits to a scientific mind that’s less than well-tuned, but she’s being modest. Her aKNITomy collection — knitted interpretations of the innards of frogs, lab rats, earthworms and the human body — have attracted interest from both the National Museum of Health and Medicine in Washington, DC  and San Francisco’s Exploratorium.

The pieces channel Stoneking’s memories of high school biology class and those formaldehyde-scented hours spent hovering over dissections, which many of us share. But they also speak to her interest in history, specifically the Medieval period, where she notes that “people were dissecting things to find out how the world works” and “the tendrils of scientific thought” can be found. It was this more humanist sensibility that motivated her to harness her knitting skills to create a softer version of science.

While the works are certainly cuddly, they aren’t entirely structurally correct because of difficulties in fitting in all the organs. “I do get notes from biologists saying, ‘I love what you do, but the biology’s wrong.’” she said. “If you really wanted to be accurate, that would be pretty [ghoulish]. What I’m after is something that’s just weird enough so people stop and say, ‘What’s that?’ So they stop and think.”

Patient Care, Stanford News, Videos

Stanford's first cataract laser surgery patient shares her story

Stanford's first cataract laser surgery patient shares her story

As she approached 80, Mary Savoie knew it was time for cataract surgery. Cataracts, produced by the yellowing of the eyes’ lenses, were interfering with many of her favorite activities and prevented her from driving at night.

For decades, eye surgeons have practiced the circular incisions to gain access to those lenses and then used ultrasound to soften and remove them. But a new laser procedure has emerged that allows patients to return to their active lives with less pain and shorter recovery time.

Savoie is the first patient at the Byers Eye Institute at Stanford, and one of the first in the Bay Area, to have a cataract removed with the help of a laser. The technique involves making a precise circular incision guided by software mapping. The laser fractures the lens into tiny pieces, reducing the need for ultrasound intensity and duration in a way that cuts recovery time. Savoie had one cataract removed with the traditional approach and the other with the laser procedure. She shares her experience in the Stanford Hospital & Clinics video above.

Previously: To maintain good eyesight, make healthy vision a priority

Cancer, Stanford News, Technology, Videos

Stanford hospital patient turns to microwave ablation for "inoperable and incurable" tumors

Stanford hospital patient turns to microwave ablation for "inoperable and incurable" tumors

Interventional radiology, like its cousin interventional cardiology, is one of those medical specialties that runs along quietly without much fanfare until it does something that’s impossible in any other fashion. Surgery, even the minimally invasive sort that has traded big incisions for smaller ones, still has limitations — particularly in certain organs and for certain patients. Such was the case for Gwen McCane, a dynamo of a lady in her 70s, who had already passed successfully through chemotherapy and radiation for pancreatic cancer when tumors emerged deep in her liver. Any sort of surgery was just not possible, but interventional radiology offered her hope.

“The great thing is that we don’t need to make large incisions in our patients,” said Stanford interventional radiologist Gloria Hwang, MD, who treated McCane. “We can go in with just the poke of a needle.”

Guided by imaging, Hwang applied microwave heat to destroy the cancerous tissues. McCane went home the next day. “Every day we see people who have a real need, and they’re scared and they want to know they have options,” Hwang said. “My mission as a doctor is to offer them these options and to offer them newer, better ways of treating their cancers.”

Now McCane is back to playing golf, conducting self-esteem workshops at a county juvenile hall, meeting friends to play cards, working in her garden and being a sparkling companion to her husband of 50 years. “I feel good,” she said. “I’m just enjoying life.”

McCane’s story is captured in the Stanford Hospital video above.

Previously: New clues arise in pancreatic cancer from Stanford researchers

Cancer, Events, Stanford News, Women's Health

At Stanford event, cancer advocate Susan Love talks about "a future with no breast cancer"

At Stanford event, cancer advocate Susan Love talks about "a future with no breast cancer"

With conversations still fresh in the air about Angelina Jolie’s decision to remove her healthy breasts as a protective measure against a high probability of cancer, Susan Love, MD, cancer survivor and author of the best-selling book on breast cancer, couldn’t have been a more apt keynote speaker at the fourth annual Stanford Women’s Health Forum yesterday. She gave a forward-looking talk titled “A Future Without Breast Cancer: Where Are We and What Can We Do.”

We don’t understand the normal breast… If we’re really going to prevent breast cancer, we have to understand it

The forum was an event focused broadly on women’s health issues, but breast cancer and cancer survivorship were major topics – with many of the 400 attendees also hearing from Mark Pegram, MD, director of Stanford’s breast cancer program, and Allison Kurian, MD, an assistant professor of oncology at Stanford whose research is focused on hereditary breast cancer. (Kurian, in fact, had spent much of her day Tuesday answering questions from the press about Jolie.)

Love, who told the New York Times yesterday that she wants people to understand that “we really don’t have good prevention for breast cancer,” described to the audience how the state of knowledge about the breast and breast cancer is far from adequate. She said:

We don’t understand the normal breast… You’d think we’d know, but we really don’t. That’s a whole area that’s been ignored and it’s another thing we have to push people to do – to not just look at the disease. If we’re really going to prevent it, we have to understand how it works, to figure out what the early changes are. Isn’t it a shame that the only thing Angelina has to do, knowing she has the (mutant) gene, is to have a normal body part cut off – because we don’t know how to prevent breast cancer?

We’ve got awareness. We don’t have to work on that; we have to go beyond that to be part of finding the solution, to demand better research and to be part of it. I think we can be the generation that ends breast cancer.

Videos of this and other talks will be posted soon on the Stanford Center for Health Research on Women and Sex Differences in Medicine (WSDM) website.

Previously: Breast cancer advocate Susan Love to deliver keynote at Stanford Women’s Health Forum, Stanford’s Mark Pegram discusses breast cancer in the genomic age, Helping inform tough cancer-related decisions, BRCA patients use Stanford-developed online tool to better understand treatment options and A closer look at preventive breast cancer surgery

Autoimmune Disease, Chronic Disease, In the News, Obesity, Stanford News

The big downside of some life-changing medications

Several years ago, I listened in a state of semi-shock as a doctor gave me a classic bad news-good news combination: The autoimmune system disorder I had was incurable and life-threatening, but researchers had recently discovered that a certain package of medications could put it into remission. I remember that conversation well, but I don’t recall the doctor mentioning much, if anything, about the side effects of those medications.

At age 12, Jena Graves of Napa, Calif. faced the same serious situation. She was diagnosed with the autoimmune system disease lupus, and among her essential medications was the same steroid I was given, prednisone. It’s a go-to medication for millions who suffer from conditions including asthma and diabetes; it’s also on a short list of commonly prescribed “obesogenic” drugs whose effect on the body includes rapid weight gain.

Graves, just 5 feet 2 inches tall, shot up from 120 pounds to 272 pounds and developed Type 2 diabetes and other obesity-related health problems.

A colleague recently shared Graves’ story, which was told again in today’s San Francisco Chronicle. In the piece, Stanford’s John Morton, MD, who performed gastric bypass surgery on Graves this summer, raises a flag on behalf of patients like her:

“All these medications are absolutely wonderful when they work in the right patients,” [said Morton]. “But we’ve got to figure out if it’s appropriate or not to blanket America with prednisone and other obesity-generating drugs that are creating problems.”

Graves isn’t the only patient who has paid the price for being on one prescription too many, he said.

“I can’t tell you how many patients come in to see me who’ve been on medications for years,” he said. He asks: “Why are you on this medication? ‘I don’t know.’ Has someone followed up? ‘No. I just get my prescription refilled.”

Previously: When medications cause severe obesity

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