Lung Health News, Spring / Summer 2005
For lung transplant recipients like Lynn Coleman and Melissa Thompson, just living to see another day is a gift. After two years on the lung transplant waiting list, Linda Regan is hopeful that she too will get a new lease on life.
Lung disease kills nearly 344,000 Americans every year. Lung transplants offer hope for the thousands who are gravely sick from illnesses such as chronic obstructive pulmonary disease (COPD), cystic fibrosis, idiopathic pulmonary fibrosis (IPF) and emphysema.
The surgical procedure is used to treat end-stage, life-threatening lung disease when all other treatment options have failed. Because of the risks involved, transplants are usually reserved for people who are likely to die from their lung disease within a couple years.
While nearly 3,900 people in this country are awaiting lung transplants, less than 1,000 procedures are performed each year. Up to 15 percent of those on the list die every year waiting for a new lung.
The transplant community is joined under one nationwide umbrella called the United Network for Organ Sharing (UNOS). Based in Richmond, Virginia, the nonprofit organization maintains the nation’s organ transplant list. (See box for information on registering to be a donor.)
Unfortunately, the survival rate for lung transplants is lower than for other organs, with less than 50 percent of lung recipients living past five years compared to more than 70 percent of heart, liver and kidney recipients.
‘Your Life Takes a Different Turn’
Coleman was diagnosed with IPF in 1970 at age 24. Doctors don’t know what caused the disease, which results in scarring of the lungs and is characterized by shortness of breath.
In 1983, the Goleta resident joined the American Lung Association’s Better Breathers Club in Santa Barbara, where she found support and encouragement. She received her new lung in 2000 at USC University Hospital in Los Angeles after 15 years on supplemental oxygen 24 hours a day and two years on the transplant waiting list.
“Your life takes a different turn after the surgery,” she says. “It makes you appreciate everything.”
Coleman was scared when she first found out her disease had damaged her lungs so badly she needed a transplant. But by the time she went in for surgery, she had come to terms with it.
“I was so tired of being sick,” she says.
Regan, who suffers from end-stage emphysema at age 55 after smoking for 36 years, was in “absolute shock” when she was told she needed a lung transplant.
“It was very painful to hear,” she says. “But then I realized I’m not helpless.”
In fact, Regan no longer feels like “a sick and dying person” thanks to the American Lung Association of California, Redwood Empire Branch. When she started requiring supplemental oxygen 24 hours a day, the Sebastapol resident decided she couldn’t work but she could volunteer.
Now she coordinates the association’s Better Breathers Club, calling all 650 members each month to remind them about upcoming meetings and see how they are doing. She sends cards to sick members and offers encouragement to those who are newly diagnosed with lung disease.
“I just can’t tell you what getting involved with the American Lung Association has done for me,” she says. “I’m doing so much better I may be able to postpone my transplant.”
Living Donors Help Those Who Can’t Wait
For Thompson, waiting for a lung was not an option. Diagnosed with cystic fibrosis as an infant, her lungs had deteriorated so much by age 26 that her only hope was a new pair.
Cystic fibrosis affects nearly 30,000 people in this country and is characterized by abnormally thick and sticky mucus that obstructs the lungs and makes it difficult to breathe. The disease is hereditary, passed on through a defective gene.
“I had been in denial,” says Thompson, who was able to live a fairly normal life as a child. “I was one of the lucky ones.”
But her disease progressed as she entered adulthood until finally she couldn’t even stand up. By then, she was out of time.
So in May 2000, the Whittier resident underwent a procedure called a living lobar lung transplant that involves transplanting the lower lung lobe from living donors. One of five lobes was removed from both her uncle and a family friend and placed inside her chest.
“It was a perfect fit,” she says.
Pioneered in the 1990s by Thompson’s doctor, Vaughn A. Starnes, MD, at the USC University Hospital, more than 230 living lobar transplants have been performed in the United States. The biggest drawback is that up to two healthy people have to undergo major surgery with some loss of lung function.
More Research Needed to Improve Success Rates
While Coleman and Thompson are immensely grateful for the renewed chance at life their lung transplants have given them, it hasn’t been without pitfalls. Coleman developed diabetes from the anti-rejection drugs and Thompson has been hospitalized for complications.
More than half of lung transplant recipients face chronic lung rejection within the first 18 months, which contributes to the lower survival rate. For the rest of their lives, recipients must take up to 20 medicines a day to ward off rejection and other side-effects.
“Unfortunately, rejection is a natural host response,” says John Belperio, MD. “The white blood cells attack the newly transplanted lung as it would any other foreign material. It’s a function of the body to protect itself.”
The researcher, who works in the Division of Pulmonary and Critical Care at UCLA Hospital, is investigating a set of proteins that are present during rejection to determine whether they can be manipulated in a way that would stop the rejection process. He received funding for his study from the American Lung Association of California’s research program in 2001.
More research is needed to help improve success rates for lung transplant recipients. Californians can invest in research through the Asthma and Lung Disease Research Fund under Contributions on their state income tax returns. The money supports the American Lung Association of California’s research program.
But for now, lung transplant recipients like Coleman and Thompson, who are approaching the five-year mark, are just happy to be alive.
