The 21-year-old gasped as she read the headline: “16-year-old girl who walks on life support and eats tacos.” He scanned the article about a girl who had a mysterious illness that destroyed her lungs and who now needed a machine for her to breathe. “I need to do something,” she said to herself after finishing the article. She believed she knew what was killing this young girl, as the story could have been her own six years ago.
At the time, she was a high school junior in the starting lineup of the girls’ volleyball team. Within days of the new school year, she developed a 103-degree fever and a sore throat. Min. Her doctor in River Falls, K.K., thought she had some kind of viral infection and predicted that she would feel better after a few days of rest. He was wrong. The fever resolved but was replaced by the deepest fatigue the girl had ever known. Just getting out of bed, he got breathless. His mother took him to the nearest emergency room 25 miles away.
As the nurse checked the young woman’s vital signs, she looked terrified. The patient’s oxygen saturation, which would normally be over 90 percent, was dangerously low in her 60s. The nurse put an oxygen mask on her nose and mouth and went to the doctor in charge. A chest X-ray showed a gray cloud attacking his lungs. Minutes later she was in an ambulance to Sanford Medical Center in Fargo, ND, the nearest hospital with a pediatric intensive care unit.
She was started on several broad-spectrum antibiotics at Fargo. The doctors there didn’t know which worm was causing the pneumonia, but until they did, they thought these antibiotics should protect her. But his condition continued to deteriorate and within a few days he had to be put on ventilator.
When that too wasn’t enough, doctors at Sanford contacted the Mayo Clinic in Rochester, Minn. Eight days after going to the ER, the patient’s lungs were hardly functioning. The next step was an artificial-heart-and-lung machine known as an ECMO – short for Extracorporeal Membrane Oxygenation. This device, about the size of a refrigerator, acts as a lung to remove the carbon-dioxide waste product from the blood and replace it with oxygen and then recirculate the oxygenated blood through the body. To act as the heart. Mayo Clinic’s ECMO team flew to Fargo with their machine, connected the young woman to the device, and flew back with her to the Mayo Clinic hospital. That machine breathed for him for the next 116 days.
Months on transplant list
Like the girl in the article, she too was walking connected to the big machine. He, too, had eaten while on the machine, though not the tacos. The first thing to pass her lips was a communion wafer when she finally felt it enough to walk at least part of the way to a hospital chapel surrounded by a crew of doctors, nurses and technicians. They never knew why his lungs failed. He spent months on the transplant list, waiting for a new heart and lungs, which his doctors thought he would never recover. But he did. And finally, after seven months in the hospital, she was able to go home.
After a few years she returned to Mayo for a checkup every six months. During those visits, she always stopped by the pediatric intensive-care unit to see the nurses who had become second family to her in the months when she was near death. In one visit, two years after his time in the hospital, several nurses told him about a child whose illness looked remarkably similar to his.
Hours later she and her parents were met by the parents of this child, who told the story of their daughter, who was just 12 years old, whose lungs had stopped working after what looked like a viral illness. The families compared notes to see if there were any similarities in the lives and exposures of the two children. They lived in different environments – one rural, one urban – in different parts of the state. Nothing matched, until the child’s parents reported that in the weeks before her arrival at the hospital, their daughter was taking an antibiotic: trimethoprim-sulfamethoxazole (TMP-SMX), better known under the brand name Bactrim. The girl died. she was taking this antibiotic (to treat acne) – right up until the day she went to the ERO
Since then, another family has approached him with a familiar story: a healthy, active teen becomes seriously ill, lungs so damaged he needs life support. She asked these parents if their son was taking TMP-SMX when he was ill. Yes, the surprising answer came. This resulted in a total of three cases. Maybe he had found a real connection.
And now this girl was in discussion. His name was Zee Uvadia. In the article, Dr. Jenna Miller is assigned to Kansas City, Mo. K Children’s Mercy Hospital, who was taking care of Uvadia. The young woman found an email address for the doctor and immediately sent her a note. “I started taking Bactrim for acne about 3-4 weeks ago” [my] Acute lung failure,” she wrote. “It happened to at least 3 kids between 12-20 years old” [old], … the parallels between our cases are uncanny.” She asked if Uvadia was also carrying the TMP-SMX.
same unusual pattern
Miller was surprised. Actually, the girl was taking TMP-SMX when she became ill. Can there be a link? Miller reached out to a friend, Dr. Jennifer Goldman, a pediatrician trained in infectious disease and clinical pharmacology. She had been researching adverse reactions to this drug for years. TMP-SMX is an effective, safe and affordable drug and as such it is the 6th most prescribed antibiotic in the country. It may be a coincidence that these four people, who are only a tiny fraction of the millions on this drug, became ill on any given day. Still, the doctors agreed that he should get tested. Two pediatricians collected medical records of the patient who sent the email and other cases he found. All were healthy young people who developed a devastating lung injury after a brief flu-like illness with fever, sore throat or cough. And everyone had taken the TMP-SMX.
What convinced doctors was a biopsy of the affected lung. Each showed the same unusual pattern of concentrated destruction: only the cells within the lungs that took in carbon dioxide and supplied oxygen were affected – the cells that perform the most important job of breathing. In two, including the patient, who first noted the connection between his illness and medication, these essential cells eventually grew back, allowing him to once again breathe on his own. Others whose lung tissue did not heal required a lung transplant. Two of those first cases died: a 12-year-old girl met in Mayo and Uvadia, a girl of the news.
In the four years since Miller received the patient’s email, she and Goldman have identified a total of 19 patients, most under the age of 20, who had this reaction after treatment with TMP-SMX. Six died. It is still unclear how the antibiotic triggers this rare but devastating destruction. Goldman thinks it’s probably an allergy of some sort. But they still can’t predict who is at risk, or why.
As an ICU doctor, Miller tells me, she uses this medication frequently. And although these cases are rare, the devastation caused by it is terrible. “Most of these people,” she says, referring to 19 cases, “were not getting treatment for a life-threatening disease, and yet they were given this simple drug – and it ended their lives or was taken forever. changed for.”
This original patient shares Miller’s mixed feelings. She is 26 years old and is a nurse who takes care of patients who have just had heart and lung transplants. She regularly gives TMP-SMX to her patients. And they need it – to treat the diseases they cause and to prevent the diseases they get. Yet she knows that because of her reaction to the drug, her lungs will never be the same. She can play a friendly game of volleyball but wind up after climbing a couple flights of stairs. Still, his life is good. And he is proud that he has made a contribution to science that he hopes will one day prevent this from happening to anyone else.
Lisa Sanders, MD, is a contributing writer for the magazine. His latest book is “Diagnosis: Solving the Most Baffling Medical Mysteries”. If you have a resolved case to share, write it to Lisa.Sandersmdnyt@gmail.com.
(This story has not been edited by seemayo staff and is published from a rss feed)