While sitting in the lobby of the Transplant Center at University of Minnesota Medical Center, Fairview, in May 2010, Liz Johnson spots one of her doctors as he turns the corner to leave the clinic. She quickly turns to her father, Dick: “Dad, there goes Dr. Kempainen. Go see if you can catch him. I want to show him my medal.” Around her neck hangs a participation medal that she had earned only a few days earlier for running a half marathon back home in Lincoln, Nebraska.
The doctor, pulmonologist Robert Kempainen, M.D., was part of the medical team that saved her life. He is also a former member of the U.S. Olympic marathon teams for both the Barcelona Summer Games in 1992, and the Atlanta Games in 1996. Johnson wants him to know that she, too, has a marathon—or at least half of one—under her belt.
As Kempainen approaches the pair, he is beaming, and there are hugs and smiles all around as Johnson shows off her medal—quite an accomplishment for someone who just over a year ago had nearly died of lung failure.
Setting the bar high
Johnson was 4 months old when doctors diagnosed her cystic fibrosis, a debilitating progressive disease that causes difficulty breathing. In most cases, the lungs eventually fail and a lung transplant is often the only option. Yet, despite the seriousness of her condition, Johnson always set the bar high for herself, recalls her mother, Sherry. Johnson managed to stay fairly healthy and joined the cross country team in middle school. Later, in college, she played intramural football, volleyball, and basketball.
But in June 2007, her doctors in Omaha, Nebraska, told her that she needed to start considering a lung transplant. Her lungs were starting to fail, and it was only going to get worse.
“I was convinced that they were crazy,” Johnson says. “I didn’t think I needed a transplant because I still felt pretty healthy. I told myself that I was going to try to train for and finish a half marathon, and if I could do that and [my doctors] still felt I needed a transplant, then I would be open to going in for an evaluation.”
But other activities, including her classes at University of Nebraska, Lincoln, kept her busy, and she never got around to training for the run. In the meantime, her health gradually but steadily declined. Looking back now, Johnson recalls that even doing a load of laundry would wear her out.
Time running out
Then, in July 2008, she became seriously ill with a bacterial infection that disqualified her from being eligible for a transplant. For eight months, she struggled to get healthy enough to go to University of Minnesota Medical Center, Fairview, for a transplant evaluation, finally making the trip in March 2009. At the hospital’s Transplant Center, she met with Jordan Dunitz, M.D., a lung transplant physician, and Jonathan D’Cunha, M.D., Ph.D., a transplant surgeon, along with other members of the team.
The verdict was clear: Johnson needed a transplant and time was running out. Her doctors placed her on the transplant list and she returned home to Nebraska with her parents to await the call that donor lungs were available. As weeks went by, however, it became clear that Johnson would soon be too weak to make the flight to Minnesota for surgery. Her family and doctors decided to have her flown by medical transport to Minnesota to await a transplant at the medical center. That was April 16.
The next day, Kempainen came on duty as the attending pulmonologist for lung transplant patients in the hospital. Johnson had a high fever and needed to be intubated to keep oxygen flowing to her steadily weakening lungs. Kempainen did everything he could for Johnson, her mother recalls, but that night he had to make the difficult decision to take her off the transplant list because she was too weak to withstand surgery. If donor lungs became available, they would go to someone else.
“It was to the point where I was wondering what it would be like to have to live another day if it was without my daughter,” recalls Sherry, her eyes filling with tears. “I knew it was coming down to the wire when we needed those lungs or we might lose her.”
The next morning, Kempainen arrived to find that Johnson’s condition had improved, and he had her relisted as quickly as possible. “He told me he really hadn’t expected to see Liz still alive in the morning,” Sherry says. Two days later, the transplant team informed the family that donor lungs were available. The lungs arrived within hours, and Johnson was in surgery with D’Cunha and Sara Shumway, M.D.
Living life to the fullest
“It felt like a miracle,” says Sherry, “but it was also very humbling because I knew [the donor] family wasn’t having the same joy we were having.”
Although Johnson remembers nothing of the last few days before her surgery, she does recall the fear she felt when she arrived at the hospital to wait for her transplant. After surgery, she says, she made the decision to live her life to the fullest.
After several weeks of cardiopulmonary rehabilitation, Johnson returned to Nebraska at the end of June 2009. In less than six months, she completed her courses at the university and graduated with her bachelor’s degree in secondary math and English education. She recently landed a job with a community college in Norfolk, Nebraska, providing administrative support and working as an online adviser to students.
And, yes, she is also getting back to running. “I set it as a goal to finally run a half marathon, and I was determined to do it,” Johnson says. Leading up to the race, her uncle in Oregon—a runner himself and a pediatrician—coached her via email and text messaging. He also flew in with his wife to join Johnson on the day of the run, and to help monitor her blood sugars during the race (Johnson developed diabetes as a side effect of the anti-rejection medicines she must take.)
Although her ankle started to bother her at mile 8.5, Johnson was hardly going to let that stop her. “I told myself that if I got to that starting line, I was going to get to the finish line, even if I had to crawl across,” Johnson says.
“To see her now, you would never know she once was so close to not making it,” says transplant nurse coordinator Bobbie Rosenthal, R.N., who has monitored Johnson’s health following the transplant. “She looks and is doing great. It is really amazing.”