AUGUSTA — Christine Lowell’s every breath relies on lungs that once belonged to her father and her uncle.
Their gifts have kept her alive for the past 16 years.
She was only 16 and dying of end stage lung disease from cystic fibrosis when father Walter and uncle David Lowell each donated a lobe of their lungs so she could live.
Lowell, now 32, is a petite woman who is among the longest-lived double lung transplant recipients who had living donors. Most transplants today use organs from cadavers.
Bright-eyed and smiling frequently, she is passionate as she advocates for more people to become organ donors.
“I would encourage everybody to sign up to be an organ donor,” she said. “There are so many people who are waiting for organs.”
She agreed to tell the story of how her family, her community and her medical care providers came together to save her life just as it seemed to be ending. She wants those waiting for a transplant “to know there’s hope and success.”
According to the website of the New England Organ Bank, a federally designated organ procurement group, more than 114,000 U.S. citizens “are waiting for lifesaving organ transplants and many more wait for donated tissues.”
An average of 17 people in the U.S. die every day — 6,600 each year — while waiting for an organ transplant, according to the website. The reason a shortage of donated organs and tissues, it says.
As part of April Donate Life Month, Maine Secretary of State Matthew Dunlap, who has long supported organ donation, hosted a news conference with representatives from the organ bank. Dunlap said of 989,147 active driver’s licenses in Maine, about 510,462 people have indicated they are willing to be organ donors.
Mainers who might not have driver’s licenses can indicate their willingness through an Organ Donor Registry offered on the secretary of state’s website.
“We want to encourage this as much as possible,” Dunlap said. “It’s little bit easier now for people in that situation (to) have their wishes known in a more timely fashion. These are tragedies, but you can make something good out of it.”
Time running out
By the summer of 1996, Christine Lowell was placed on a waiting list for cadaver lungs. Her health declined rapidly, resulting in a series of hospitalizations.
David Lowell suggested a living transplant.
“My brother called and said, ‘If you need a donor, I’m available,'” Walter Lowell recalled recently as he sat next to his daughter on the couch in the family’s living room. “That was the first time it entered my head as a possibility.”
The brothers underwent tests to see if they were compatible, but Massachusetts General Hospital decided the match wasn’t close enough, Walter Lowell said.
Then one of Christine Lowell’s doctors, Anne M. Cairns, contacted Children’s Hospital in St. Louis, where she had trained, and a doctor and nurse flew to Massachusetts and took the patient and her father back with them.
“She didn’t have many options left,” her father said.
Christine Lowell was stabilized and was put on another waiting list for cadaver lungs because doctors figured her chances for a match were better at a centrally located hospital.
“I was deteriorating,” Christine Lowell said. “I could not get out of bed. I could not walk 10 feet to the bathroom. I was on four to six liters of oxygen. It was extremely unlikely I was going to survive the eight months or so for cadaver lungs to arrive.”
Walter Lowell asked doctors to reconsider the living donations because of her condition and because the constant travel between Maine and Missouri was such a strain on the family. Finally, the donors got the green light.
“Living donor surgery is rare,” Christine Lowell said. “They don’t want to operate on three people if they don’t have to.”
Living-donor lung transplants generally are considered too risky and are rarely done, according to the Cystic Fibrosis Foundation’s website.
In 2004, there were 28 living-donor lung transplants performed in the U.S., compared with 1,000 deceased-donor transplants, according to the website. In 2009, only one living-donor lung transplant was performed in the U.S., compared with 1,600 deceased-donor transplants, it says.
Lowell’s family moved to St. Louis, Mo., during the winter. Lung nodes were removed from David and Walter Lowell at Barnes-Jewish Hospital, put inside a Styrofoam cooler and rushed across the street to Children’s Hospital on Jan. 28, 1997.
“Part of the beauty of that kind of transplant is that the lobes I would receive would fill my chest cavity and give me normal lung function,” Christine Lowell said. “Their residual lung tissue expanded to fill the space.”
The result was miraculous.
“It was really such a dramatic change from end-stage lung disease to feeling really free in my own body,” she said. Each year the family celebrates the anniversary of the surgery as a second birthday for her.
She celebrated “the simple pleasures in life. I could taste food, enjoy a meal.”
She also traveled with her family and went biking, hiking and snorkeling.
“I have done extremely well with my transplants,” she said. “For my center (St. Louis), I’m one of the longest-surviving lung transplant patients. For me to be 16 1/2 years out of transplant is an incredible success. It is a testament to the fact I received the best medical care the country had to offer.”
She continues to credit her doctors: Cairns, Nicholas Fowler and Jonathan Zuckerman, from Maine; and her transplant team, George Mallory and Charles Huddleston, for the care both pre- and post-transplant.
“I graduated from high school,” she said. “I didn’t think that was going to happen; attending college was a bonus.”
Her Cony High School class of 1999 donated half of its Project Graduation money to help with costs her parents’ insurance didn’t cover; Prince of Peace Lutheran Church raised money, as did numerous community groups and organizations.
Walter Lowell said he would arrive home in Augusta to find someone had plowed their driveway and someone had left groceries on their porch.
“Despite having all of these challenges, we did experience the best of humanity from neighbors, family and friends,” he said.
David Lowell, 68, of Cumberland Center, said he was happy to donate part of his lung to his niece.
“At that time, she was down to 50 pounds,” he said. “She’s a pretty tiny girl, so our lungs were more than adequate to take care of her.”
Later he donated 60 percent of his liver to his son, Andrew, whose cystic fibrosis targeted his liver, and who died in 2001 at age 24.
“It’s more or less a philosophy of our family. We’ve been blessed with a lot of good things and we try to give back,” David Lowell said. “It’s something my parents instilled in us and my brothers continued that right along.”
On Friday, he embarked on his 10th mission trip to the Global Health Ministry’s mission in the foothills of southeastern Guatemala. There, Lowell, who has been a doctor of optometry in Maine for almost 42 years, performs eye examinations, provides glasses free of charge and refers patients for surgery.
“We really need to make people aware of organ transplantation,” he said. “Every family should talk about it, because there’s a big need out there.”
Betty Adams — 621-5631