New lungs, new life
In November 2015, Steve Nix, then 46, started feeling tired all the time and had difficulty catching his breath, but he considered these things minor problems and didn’t think much about them. Then his symptoms got much worse and couldn’t be ignored.
Nix says he reached a point when he couldn’t complete even the easiest tasks. “It put a strain on my wife because she had to take on all of my chores in addition to hers. I couldn’t take care of our kids, either. It took a mental toll on the whole family.”
On June 13, 2016—just four days after his 47th birthday—Nix was diagnosed with pulmonary fibrosis, a disease that causes lung tissue to become thick, stiff and scarred. As a result, normal breathing becomes difficult. Though there are many causes of pulmonary fibrosis, for most patients, including Nix, that cause is never fully understood.
By October, Nix was no longer able to work as a floor layer, a job he’d held for 23 years. In December, he was admitted to Barnes-Jewish Hospital and evaluated for lung transplantation. As an otherwise healthy and relatively young man, he was ultimately considered to be a good candidate for the surgery. But his condition continued to worsen, and he was placed on a mechanical ventilator that did his breathing for him. His lungs were so diseased, however, that ventilation didn’t work as it should, and he developed high levels of carbon dioxide in his lungs.
“It was at a point where it seemed it might be necessary to stop treatment and arrange for palliative care for him,” says Keki Balsara, MD, a cardiothoracic surgeon at Barnes-Jewish Hospital.
But Nix’s team of experts decided to try another option: ECMO, or extracorporeal membrane oxygenation. When a patient is placed on ECMO, a machine pumps the patient’s blood outside the body, where it is oxygenated, and then pumps it back into the patient’s bloodstream. In other words, ECMO essentially replaces the function of the lungs. The plan was to keep Nix on ECMO until a donor lung became available.
“Using ECMO as a bridge to lung transplant was the only option we had to keep Mr. Nix alive,” says Daniel Kreisel, MD, PhD, surgical director of the lung transplant program at Barnes-Jewish Hospital. “Without a transplant, there was no hope that his lungs would recover to the point that we could remove him from the ECMO circuit. His family agreed to proceed with ECMO to save his life.”
This approach is not a common one. In fact, Barnes-Jewish Hospital is one of the few medical institutions in the country that performs lung transplants in patients who have been treated with ECMO. In 2015, the hospital started an ECMO transplant program to reach patients like Nix who will not survive the wait for transplantation. As part of this outreach program, Balsara travels by helicopter to other medical centers to offer ECMO to patients who might not otherwise survive. Once stabilized, these patients are flown to Barnes-Jewish to await transplantation.
“Had Mr. Nix arrived for treatment at another facility, it’s possible his physicians would not have known that ECMO could provide a survivable outcome,” Kreisel says. “And many other institutions would not have considered him for transplantation. We are working now to raise awareness of ECMO as a possible bridge to lung transplantation.”
Though patients often wait months for a donor lung and transplant surgery, Nix was so sick that he received new lungs in early 2017, just four days after he was placed on ECMO. A month and a day later, he was well enough to leave the hospital and continue recovery at home.
Today, Nix says he feels good mentally and notes that he improves physically a little bit each day. He’s looking forward to returning to work and is considering a career change.
“I wake up every morning and thank God for this second opportunity,” Nix says. “Then my wife and kids wake up, and I do a bunch of running around.” With nine kids and seven grandkids, he’s not exaggerating. But he’s grateful for his family’s support, and he offers thanks to the family that made his donor lung possible.
Nix also says he is grateful for everyone at Barnes-Jewish Hospital—the surgeons, physicians, housekeepers, technicians, rehab therapists and nurses—who helped care for him. He believes that this team effort makes the hospital’s lung transplant program one of the best.
Of the 77 such programs in the United States, Barnes-Jewish Hospital’s program is one of only five to achieve a five-star rating from the Scientific Registry of Transplant Recipients, an assessment that is based on patient outcomes. In part, the program’s outcomes are grounded in depth of experience and volume, with 83 lung transplants performed last year.
“Mr. Nix’s story illustrates another reason for our success,” says Ramsey Hachem, MD, medical director of the lung transplant program at Barnes-Jewish Hospital. “We offer a multidisciplinary approach to caring for our patients. In Mr. Nix’s case, a team of pulmonologists, thoracic surgeons and cardiac surgeons collaborated to provide care that included ECMO, lung transplantation and recovery. As a result, a young man with young children who was critically ill got a new lease on life.”