Her Lungs Mysteriously Shut Off. How can it happen?

The 21-year-old woman gasped as she read the headline: “16-year-old girl walks and eats tacos while on life support.” She flips through an article about a girl with a mysterious illness that has destroyed her lungs and who now needs a machine to breathe for her. “I need to do something,” she told herself after finishing the article. She believes she knows what is killing this young girl, because the story may have been her own, six years earlier.

At that time, she was still a high school student in the starting line-up of the girls’ volleyball team. Just a few days before the new school year, the girl had a fever of 103 degrees and a sore throat. Her doctor, of Thief River Falls, Minn., discovered she had some kind of virus and predicted she would feel better after a few days of rest. He’s wrong. The fever had subsided but was replaced by the deepest fatigue the girl had ever known. As soon as she got out of bed she had trouble breathing. Her mother took her to the nearest emergency room, 25 miles away.

When the nurse checked the young woman’s vital signs, she looked alarmed. The patient’s oxygen saturation, usually more than 90%, in his 60s, is dangerously low. The nurse patted the oxygen mask over her nose and mouth and went to the doctor in charge. A chest X-ray showed a gray cloud invading her lungs. Minutes later, she was in an ambulance to Sanford Medical Center in Fargo, ND, the nearest hospital with a pediatric intensive care unit.

In Fargo, she was started on several broad-spectrum antibiotics. The doctors there didn’t know which bug caused the pneumonia, but until they found out, they realized that these antibiotics would protect her. But she continued to deteriorate, and within days had to be put on a ventilator.

When that wasn’t enough, doctors in Sanford contacted the Mayo Clinic in Rochester, Minn. Eight days after she entered the emergency room, the patient’s lungs were barely functioning. The next step is a familiar heart-lung machine called ECMO – short for extracorporeal membrane oxygenation. This device, about the size of a refrigerator, acts as a lung to remove the waste carbon-dioxide from the blood and replace it with oxygen and then as a heart to circulate oxygenated blood. back to the body. The ECMO team from the Mayo Clinic flew to Fargo with their machine, attached the young girl to the device, and flew back with her to the Mayo Clinic Hospital. That machine breathed for her for the next 116 days.

Like the girl in the article, she is also walking while connected to the giant machine. She also ate while using the machine, although not banh tet. The first thing that crossed her lips was a Communion plate when she finally felt well enough to make at least some of the way to the hospital chapel surrounded by a team of doctors, nurses and technicians. They never found out why her lungs failed. She spent months on the transplant list, waiting for a new heart and lung to replace what her doctors said would never recover. But they did. And finally, after seven months in the hospital, she was able to go home.

For the next few years, she returned to Mayo every six months for a checkup. During those visits, she always stopped by the pediatric intensive care unit to see the nurses, who became her second family in the months she was near death. During one visit, two years after her time in the hospital, some nurses told her about a child who had a disease similar to hers.

Hours later, she and her parents met the child’s parents, who told the story of their daughter, who was 12 years old, whose lungs simply stopped working after an illness that looked like a stroke. disease caused by a virus. Families compared notes to see if there were any similarities between the two children’s lives and interactions. They live in different environments – one rural, one urban – in different parts of the state. Nothing seemed to match, until the child’s parents reported that in the weeks leading up to hospital arrival, their daughter had been taking an antibiotic: trimethoprim-sulfamethoxazole (TMP-SMX), known came up with the nickname Bactrim. The young woman gasped. She took this antibiotic (in her case to treat her acne) – right up until the day she went to the doctor

Since then, another family has contacted her with a familiar story: A healthy, active young man is desperately ill, his lungs damaged enough to require life support. She asked these parents if their son would take TMP-SMX when he was sick. Well, came the amazing answer. That makes a total of three instances. Maybe she found a real connection.

And now there’s this young woman in the news. Her name is Zei Uwadia. Jenna Miller is a pediatric ICU specialist at Children’s Mercy Hospital in Kansas City, Mo., who is caring for Uwadia. The young woman found a doctor’s email address and immediately sent her a letter. “I started using Bactrim for acne about 3-4 weeks ago [my] she wrote. “This has happened to at least 3 children aged 12-20 years [old]. … The similarities between our cases are uncanny. She asked if Uwadia also used TMP-SMX.

Miller was surprised. Indeed, the girl was taking TMP-SMX when she was sick. Maybe a link? Miller reached out to a friend, Dr. Jennifer Goldman, a pediatrician with training in infectious disease and clinical pharmacology. She has studied the adverse effects of this drug for many years. TMP-SMX is an effective, safe, and inexpensive drug, thus the sixth most prescribed antibiotic in the nation. It may be a coincidence that these four people, a tiny fraction of the millions of people taking this drug on any given day, are sick. However, the doctors agreed that they should investigate. The two pediatricians collected the medical records of the emailed patient and the other cases she found. All were healthy young adults with severe lung damage following a brief illness, often accompanied by fever, sore throat or cough. And they all used TMP-SMX.

What convinced doctors that there was a link were biopsies of the affected lung. Each cell showed a similar pattern of abnormally concentrated damage: The only cells in the lungs affected were those from which carbon dioxide was absorbed and supplied with oxygen – the cells that do the important work. The most important is breathing. Of the two, including the patient who first noted a link between her illness and the drug, these essential cells eventually grew back, allowing them to once again breathe on their own. Others have unrecoverable lung tissue that needs a lung transplant. Among the first cases, two people died: the 12-year-old girl she met in Mayo and Uwadia, the girl in the news story.

In the 4 years since Miller received the patient’s email, she and Goldman have identified a total of 19 patients, most of them under the age of 20, who had this reaction after being treated with TMP-SMX. Six people died. It remains unclear how this antibiotic causes this rare but devastating devastation. Goldman thinks it could be some kind of allergic reaction. But they still can’t guess who is at risk, or why.

As an ICU doctor, Miller told me, she uses the drug regularly. And although these cases are rare, the devastation caused is devastating. “Most of these people,” she said, referring to the 19 cases, “didn’t get treatment for a life-threatening illness, but they were on this common drug — and it ended. their life or change it forever.”

This initial patient shared Miller’s mixed feelings. She is now 26 years old and is a nurse caring for patients who have recently received heart and lung transplants. She regularly gives her patients TMP-SMX. And they need it – to treat the illnesses they have and prevent the ones they might get. However, she knows that, because of her reaction to that drug, her lungs will never be the same. She can play a friendly game of volleyball but gets windy after climbing a few flights of stairs. However, she has a good life. And she prides herself on making a contribution to science that she hopes will one day prevent this from happening to anyone else.

Lisa Sanders, MD, is a contributing writer for the magazine. Her latest book is “Diagnosis: Solving Medical Mysteries.” If you have a resolved case to share, write to her at [email protected]

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