People with lung disease are breathing easier under new transplant protocols
At first Gary Broberg figured it was just a matter of being 49. As winter 2004 turned to spring, the Mendota Heights father of two found he didn’t have the energy he once did. He got winded going up a flight of stairs. It seemed he was always out of breath. He felt odd … and old.
By Memorial Day weekend Broberg decided he’d better see a doctor. He was advised to exercise and lose weight. He also was treated for various ailments, to no avail. Finally, in July he was referred to a pulmonologist.
“It never dawned on me that there was something seriously wrong,” Broberg says. “I thought, ‘They just have to diagnose this thing, and then there will be a pill or a shot or something to clear it up,’” he says.
After CT scans revealed severe lung scarring, the specialist diagnosed pulmonary fibrosis. The pink, spongy network of air sacs that had once made up Broberg’s healthy lungs was, for some reason—no one could say why—becoming stiff, useless tissue. Instead of going back to work with a quick fix, Broberg ended up at home waiting for a hospital supply company to deliver an oxygen tank.
Over fall and winter, Broberg’s lungs continued to deteriorate. In January he met with Timothy Whelan, M.D., a lung transplant specialist at the University of Minnesota Medical Center, Fairview, Transplant Center. In May he was added to the list of people waiting for donor organs. Then, on July 28, 2005, he received a new lung and a new life.
An organ transplant is a miracle under any circumstances. In Broberg’s case, it was doubly so. Recent changes in how donor lungs are procured and allocated dramatically reduced his waiting time and increased his chances of getting a transplant in time to save his life. Under the old system, his wait would have been close to three years.
“He clearly never would have lasted three years on a waiting list,” says Whelan, an assistant professor of medicine and director of the interstitial lung disease program at the University. “He would have died, no question.”
If you’re a registered organ donor, you’ve requested that, after you die, your heart, lungs, and other organs be used to save the lives of others who need them. But who decides which “others” will benefit—and when?
Since 1986, organ allocation has been overseen by the United Network for Organ Sharing (UNOS), a national nonprofit organization under contract with the federal government. For many years, the standard procedure for lungs was to add people in need of an organ to a “first-come, first-served” list, requiring them to wait in line for a transplant. When a donor organ became available, the search for a good-fit recipient began at the top of the list—regardless of the degree of medical urgency. The result: Those who lived long enough to make it to the top of the list received lungs, while more desperate candidates died waiting.
“The old system was unfair to everybody,” says Cynthia Herrington, M.D., assistant professor of cardiovascular and thoracic surgery at the University and surgical director of lung/heart-lung transplantation at the Transplant Center.
In 1998, recognizing the limitations of the original allocation system, the federal government ordered UNOS to revamp it. After much discussion, the UNOS Thoracic Organs Committee came up with a ranking system that assigned lung transplant candidates over age 12 a score from 0 to 100 based both on medical urgency and potential benefit from a transplant. In May 2005—the month Broberg signed up—the new queue system went into effect.
Its impact was instantaneous. Immediately, donor lungs began going to individuals such as Broberg who were judged to be in the toughest shape and, therefore, with the most to gain. As a result, the national waiting list got shorter, and the number of people who died while waiting for a lung transplant dropped from 489 in 2004 to 220 in the first 11 months of 2006.
“[The new system] focused lung transplants on those who needed them most,” says John Lake, M.D., professor of medicine and surgery and executive medical director of solid organ transplantation at the Transplant Center.
Whelan says the jury is still out on the equity of the new system and its impact on those on the waiting list over the long term. But, he says, “I think it’s doing the right thing… It gives me a lot of hope to offer patients without other options.”
What about individuals in less dire circumstances? Does the new allocation system leave them out in the cold?
Not at the University, says Marshall Hertz, M.D., director of the Medical School’s Center for Lung Science and Health, which provides access to a broad range of innovative nontransplant approaches to enhancing lung function. Some treatments help patients stay healthier while they wait for a lung. Others, such as surgical intervention for emphysema and medication for primary pulmonary hypertension, may make transplantation unnecessary for some patients. Many patients have the opportunity to participate in clinical trials that offer access to the newest approaches to combating loss of lung function caused by pulmonary fibrosis, chronic obstructive pulmonary disease, pulmonary hypertension, or cystic fibrosis.
“We really try to structure our lung disease program so we can care for more of these patients and prevent them from needing a transplant,” says Hertz, who is also a professor of medicine and medical director of the Transplant Center’s lung transplant program.
Barry Friedman, senior director of organ transplant services for the University of Minnesota Medical Center, Fairview, notes that this focus has brought a growing number of referrals from physicians who recognize the program is not a “transplant mill” but a comprehensive effort to promote lung health.
“When people are diagnosed with end-stage lung disease, the University of Minnesota is one of the only centers in the United States that can offer them multiple protocols,” Friedman says.
“They may come here for a transplant, but we may decide that a medical or surgical procedure on the patient’s own lung is a better option.” Whenever possible, says Friedman, a team of physicians and nurses tries to restore the patient’s health by improving lung function—without resorting to a transplant.
Demand and supply
Being at the top of the transplant list made a life-or-death difference for Gary Broberg—but only because a donor lung became available. The fact that one did is likely due to a second big change that has bolstered lung transplantation nationally: improvements in obtaining donor organs.
As with other types of solid organ transplants, nonprofit groups known as organ procurement organizations, or OPOs, are responsible for obtaining and distributing donated lungs. When a hospital becomes aware of a prospective donor, it contacts the regional OPO, which works with family members to determine whether organ donation is an option. If it is, the OPO serves as the bridge between donor and recipient, making sure organs are delivered where they’re needed, when they’re needed, and in good enough shape to last a lifetime.
In 2003, in an effort to boost the availability of organs for transplantation, the U.S. Department of Health and Human Services organized the Organ Donation Breakthrough Collaborative with the goal of identifying OPOs with the best track records and encouraging others to emulate them. LifeSource, the OPO that serves Minnesota and the Dakotas, had organ procurement rates to be proud of—for all organs except lungs. For lungs, it was in the bottom third.
“We were not satisfied with that position at all,” says LifeSource CEO Susan Gunderson. In February 2005, after a discouraging year in which only 28 lungs were transplanted from the 147 donors in the region, LifeSource joined with the region’s two lung transplant centers—the University of Minnesota Medical Center, Fairview, and Mayo Clinic—in a “lung summit” to brainstorm ways to boost lung procurement.
“The bad year was unfortunate,” says Whelan, “but it made everybody perk up and want to pay attention.”
“Our premise was that we as the donor program really have the responsibility to do everything we can to increase donations and maximize the gift of donations,” Gunderson says. “If a family makes the gift of donation, we have to be stewards of that gift.”
The summit participants sought advice from OPOs with higher lung procurement rates. They looked at their own procedures to see what could be improved. Whelan added ideas he had gathered while developing a donor-management protocol at the University of Washington before coming to Minnesota in 2003.
“We begged and borrowed, but a lot we created on our own,” says Herrington, who was an invited expert with the breakthrough collaborative and key in instigating the lung summit. “We completely revamped the lung protocol.” And it worked.
In 2005, 75 lungs were transplanted from 181 LifeSource donors—more than double the rate of the previous year. Soon the Minnesota group was fielding calls from other OPOs hoping to copy its success.
The lung summit group continues to meet every few months to review recent cases and plan further actions to improve lung procurement. “We’re always looking at new opportunities and at how can we advance,” Herrington says.
“It’s been great,” adds Whelan. “It’s amazing what you can do when you work together.”
The bigger picture
Thanks to these impressive improvements in organ allocation and procurement,the number of lung transplant surgeries at the University’s medical center is growing. Both 2005 and 2006 were record years, with 45 and 47 transplants, respectively, compared with 19 in 2004.
“We’ve had outstanding results,” Hertz says. “This year our numbers looked fantastic.”
Ironically, those increases create new challenges for the mainstream health-care community, as individuals with once-fatal diseases prepare for transplant,then enter a new chapter in their lives with a new lung.
“All of the transplant procedures have their specific complications,” Lake says. “For the physicians who see these patients, it means acquiring a whole new knowledge set they probably didn’t hear about during medical school or even during residency training.
With the combined resources of the Center for Lung Science and Health and the Transplant Center—and even a dedicated transplant pharmacy—the University is well equipped to give lung transplant patients the specialized care they need before a transplant and in the days immediately following surgery.
To help cover care before and beyond transplant, Hertz and colleagues have written a book for primary care physicians on the special health-care needs of people who will or have received a lung transplant. The book, Manual of Lung Transplant Medical Care, provides valuable advice ranging from referral criteria to issues related to immunosuppression, infection prevention, and changes in the digestive, nervous, and other systems after a lung transplant.
Here at the University, lung transplant recipients and recipients-to-be have access to yet another valuable resource—each other. A hospital-sponsored support group brings patients together on Monday mornings so they can serve as a source of encouragement, information, and assistance to one another.
“The support group is critical for people who find out they need a transplant or are being evaluated for one,” says Broberg, who continues to attend meetings to encourage others awaiting a transplant. “At my first meeting, one group member related that he was able to play golf 50-plus times the first summer post-transplant. He said he played somewhere around 100 rounds the following year. He looked and sounded great. I wanted some of that for myself! Right then and there, my spirits were lifted by seeing firsthand the potential for a better life through lung transplantation.
Broberg’s life is not as simple as it once was. Immunosuppression turns minor inconveniences like the common cold into formidable foes. And his lung function is less than 100 percent. But, he says, it sure beats not being able to breathe at all.
“Coming down with this condition was not a lucky thing by any means.
It’s nothing you’d wish on anybody. But a lot of factors have gone my
way since the time I found out I was ill,” he says. “I tell people we
are very, very blessed to have a facility like the University of
Minnesota hospital right here in our backyard.”
By Mary Hoff