MrBallen’s Medical Mysteries - Ep. 21 | Breathless

Episode Date: February 27, 2024

In 2012, a healthy high school volleyball star suddenly has to fight for every breath she takes. Within a few weeks, she’s on the list for multiple organ transplants and needs a refrigerator-sized machine to keep her alive. Her doctors have no idea why this is happening to her – until the answer comes from a place nobody ever expected.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Hey Prime members, you can binge episodes 49 to 56 right now and ad-free on Amazon Music. Download the app today. In 2012, a teenager in Minnesota opened her eyes from a deep sleep. One of the last things she remembered was feeling sick at a volleyball practice. Now she saw that she was lying in a bed in a small, crowded room. She heard piercing tones and beeps coming from something on her right side. She tried to sit up and realized that she could barely move. In fact, it took all of her strength just to lift her head and look down toward her feet.

She was shocked at what she saw. Narrow plastic tubes and white wires were piled like spaghetti all around her. As she moved, she felt a pulling sensation and she realized that all these tubes and wires were attached to her body. And then she saw that they all led to one place, a massive machine the size of a refrigerator sitting on the right side of her bed. Out of the corner of her eye, she saw someone come into the room. It was her mother, and her eyes were filled with tears. She took her daughter's hand and explained that the giant machine to the right of her was breathing for

her. It was keeping her alive, and she might need it for the rest of her life. kill list is a true story of how i ended up in a race against time to warn those who lives were in danger follow kill list wherever you get your podcasts you can listen to kill list and more exhibit c true crumb shows like morbid early and ad-free right now by joining Wondery, I'm Mr. Ballin, and this is Mr. Ballin's Medical Mysteries, where every week we will explore a new baffling mystery originating from the one place we all can't escape, our own bodies. If you liked today's story, the next time the follow button is asleep, please decorate their car paper mache style. This episode is called Breathless.

It was the first day of school in September of 2012, and a 16-year-old girl named Emma stood at her locker in the tiny town of Thief River Falls, Minnesota. She had volleyball practice next, so she threw a water bottle, a deodorant stick, hair ties, and a few other items into her backpack. Emma was excited that summer was over and they were back in school, but really just because she was excited about sports, not so much for her classes. She had made the varsity volleyball team, and now she was anxious to get on the court with her teammates. Emma looked in the tiny mirror mounted on the inside of her locker door, and immediately she grimaced at her reflection. She touched up her eyeliner and pulled her hair

back into a tight ponytail. Her acne was flaring up again, even though she was taking medication for it, so she put on some concealer to cover it up. Then she threw the makeup into her backpack and shut her locker. A few minutes later, Emma walked into the noisy school gymnasium and dropped her backpack behind the bleachers. She could hear the familiar squeaking of sneakers and the smacking of volleyballs as her friends warmed up for practice. Emma felt right at home as she ran out to join them. But about halfway through the practice, Emma began to feel really tired. And not the normal kind of tired from like working out or running around. Her feet felt really heavy and her heart was pounding.

When she looked around, she saw her teammates did not seem tired. So Emma just pushed herself and continued running all the drills. But after a few more minutes, she felt so winded that she just had to stop. And so her teammates rushed past her as Emma knelt down on one knee to catch her breath. Emma was used to feeling very fit and strong, but now her chest felt tight and she could barely breathe. She staggered to her feet and stumbled over to the bleachers. Emma's head felt heavy as she held it in her hands. She felt a sharp pain in her throat every time she swallowed, and now she was starting to feel scared. Her coach walked over and asked Emma if she was okay. Emma silently shook

her head no. Her coach placed the back of her hand on Emma's forehead, and she told Emma she was burning up and suggested she go home and rest. Emma nodded and then stood and slowly shuffled around the bleachers to pick up her backpack. She dug out her phone from inside and then called her mom and then told her she wasn't feeling good and needed to come home early. When Emma's mother arrived, she felt her daughter's forehead and saw she was burning up, so she drove Emma right to their family doctor. The doctor took Emma's vitals and discovered she definitely had a fever, with a temperature of 103 degrees Fahrenheit. So she was sick for sure. He tested

to see if Emma had strep throat, a common illness among teenagers, but the test was negative. After reviewing her charts for a few minutes, the doctor explained to Emma and her mother that Emma probably had a fast-moving viral infection. He told her to go home and rest and that her symptoms should clear up in a couple of days. Emma was glad to hear that it wasn't anything serious. She didn't want to miss a lot of volleyball practices. But when Emma woke up the next day, she felt more tired than she ever had in her whole life. It was like her limbs just didn't want to move

and her lungs could barely take in any air. Emma cried out for her parents, Janet and Martin, and a few seconds later they ran into Emma's room and the second they saw how sick Emma looked, they told her, we're going to the emergency room right now. During the 25-mile drive to the hospital, Emma struggled to breathe. By the time they finally arrived, Emma was gasping for air as hospital staff helped her out of the car and onto a gurney.

As a nurse wheeled Emma into a room, her mother squeezed her hand and her father followed close behind. The nurse's soft voice was very comforting as she asked Emma questions, but Emma struggled to answer even simple ones like where did she go to high school. Emma vaguely felt the prick of a needle in the crook of her elbow as the nurse attached an IV and drew several vials of blood. Then the nurse placed an oxygen mask over Emma's nose and mouth and picked up a phone. Emma could hear the seriousness in the nurse's voice. She wondered if maybe this was just how nurses sounded in the ER, or maybe this was something really bad. A few minutes later, the nurse wheeled her gurney to a room down the hall

and positioned a large x-ray machine over Emma's chest while she lay there. Emma knew that the x-rays could not actually hurt her, but as the machine began to click and hum, Emma really started to feel terrified. What was wrong with her? When the nurse wheeled Emma back to her room after the x-ray, she turned down the harsh overhead lights and told Emma to rest while they waited for the results. Emma was grateful for the peace and quiet. She closed her eyes and immediately sank into a deep sleep. An hour later, Emma was startled awake as the doctor wheeled in a computer and dimmed the overhead lights, pulling up a digital image of her chest.

Janet and Martin, Emma's parents, stood up from their chairs in the corner of the room as the doctor began to point to all these dark cloudy spots on the image. The doctor told Emma and her parents that the grayish cloud on her lungs indicated a severe case of pneumonia. The doctor explained that they could treat the pneumonia with drugs, but the big question was what caused Emma's lungs to become so infected. It could be a bacteria, a virus, a fungus, or something else.

Hopefully more tests would help them figure it out. But the doctor said that this small regional hospital was not equipped to run those type of tests. He was arranging for Emma to be transferred to the Sanford Medical Center in Fargo, North Dakota, almost 100 miles away. It was the closest hospital with a pediatric intensive care unit. Emma grabbed onto her mother's hand as an orderly came to wheel her into another ambulance. Volleyball practice suddenly seemed very far away. About two hours later, a physician at Sanford Medical named Dr. Sherry Richards rushed down the busy hall in the pediatric ICU and into Emma's room. Emma's mom sat next to her

sleeping daughter, brushing hair out of Emma's face, while her father sat in the corner, anxiously bouncing his leg. Dr. Richards introduced herself to the parents and then walked up to examine Emma. And right away, she noticed Emma had very shallow breathing and bluish lips and fingertips. And then she gently touched Emma's hand and it was cold. These were all symptoms of Emma's pneumonia. Dr. Richards smiled at Janet and Martin and told them she was going to prescribe powerful antibiotics to suppress the infection in Emma's lungs. Now, she wasn't sure exactly what was causing the infection, but these antibiotics covered a broad spectrum of disease-causing agents,

so hopefully the drugs would help Emma start to feel better while Dr. Richards continued to look for more specific answers. But the next morning, less than 48 hours after Emma initially felt ill, her condition only seemed to be getting worse. She had an extremely high fever and her breathing was shallow and rapid, and so very little oxygen was reaching her bloodstream. Dr. Richards needed to do something drastic. She asked Emma's parents for permission to place Emma on a ventilator, a machine that forces air into the lungs when someone is struggling to breathe. Emma would need to have a tube inserted through her windpipe

so enough air and oxygen could reach her lungs. Her parents hated the idea, but watching Emma gulping for air, they told the doctor to do whatever it took to help their daughter. Dr. Richards checked in on Emma every day, hoping that with more oxygen, Emma's lungs would get better. But even with the help of the ventilator, Emma wasn't recovering. Emma's heart and other organs were not getting enough oxygen to function properly. Dr. Richards was perplexed. She said to a nurse how incredibly rare it was for a young athletic high school student to be put on a ventilator.

Sudden respiratory failure like this did not just happen out of the blue. The most likely cause for what was happening to Emma would be some kind of viral or bacterial infection, but Dr. Richards thought that was unlikely for one simple reason. None of her schoolmates were getting sick. It was just Emma. So Dr. Richards took a closer look into Emma's patient history to see if there was anything about her on an individual level that could spark any clues. By all accounts, she seemed like your average teenage girl, whose only regular medication was a very common acne treatment, meaning it was extremely unlikely that Emma's current condition

was caused by a rare side effect from this acne treatment. Also, Emma did not have any relevant allergies either. So, to cover all her bases, Dr. Richards ordered a wide range of tests. She wondered if maybe the respiratory issues were caused by a blood clot in Emma's lungs, or maybe she had undiagnosed rheumatoid arthritis that scarred her lungs. But every test Dr. Richards ran on Emma just came back negative. Dr. Richards was totally stumped. And so she suspected that whatever was happening to Emma

had to be extremely rare. It was so uncommon, she couldn't find any existing records of similar cases anywhere. Which also meant she couldn't find a way to treat it. It quickly became obvious that the ventilator was not enough to stabilize Emma's breathing. After a few days, Dr. Richards switched her to a more powerful ventilator that pumped even more air into her lungs, but even that was still not enough.

There was only one option left, a very powerful machine that is normally reserved for patients on the brink of death. A team from the famed Mayo Clinic flew to Fargo with a high-tech, refrigerator-sized device known as an ECMO machine. All the blood in Emma's body would now circulate through this ECMO machine, which essentially takes over the job of her heart and lungs. The ECMO machine required surgery to insert all the thin plastic tubes into Emma's body, and her mother immediately gave permission to do the surgery, knowing this could be Emma's only hope. As soon as Emma's surgery was done and she was successfully hooked up to the ECMO machine, Dr. Richards arranged to fly her back to the Mayo Clinic in Rochester, Minnesota.

There, Emma would be under the care of specialists who had experience treating patients who were as critically ill as Emma was. But this also meant she would now be 400 miles away from her home. As Dr. Richards watched the team roll Emma and the giant ECMO machine toward the airplane, she shook her head at the danger

her young patient now faced. She was convinced that Emma's heart, lungs, and kidneys were so damaged that they would never function again without the help of this machine. Now, Emma's only hope of getting off the ECMO machine was to get new organs. But the wait for a three-organ transplant could take months, months that she might not have. For now, the ECMO was saving Emma's life, but there was a catch. The longer she had to wait for new organs,

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Stream free on Freeview and Prime Video. Once Emma was settled in at the Mayo Clinic, her new doctor explained the situation to her. She was at the top of the priority list to receive her new organs, but there was no telling how long that might take. Emma fought to keep her emotions under control. In just a few short weeks, she'd gone from the varsity volleyball team to needing a machine to stay alive. It was almost overwhelming to process. But Emma

refused to lay back and mope. She was determined to regain control of something in her life. So she told her doctor she wanted to walk. She saw the doctor look at her with amazement. He encouraged her to go for it, but he also gently told Emma that given her condition, he wasn't sure that she could even muster the energy to stand, let alone take a step. And even if she could, she'd have to drag along this massive ECMO machine and all the tubes and monitors that came with it. But as an athlete, Emma was familiar with the importance of a good attitude. She knew she was physically weak, but she was also very determined.

With enough time and effort, she was certain she could eventually walk on her own. So Emma asked some nurses to help her sit up and place her feet on the floor. She was so dizzy that her head spun and she had to lie down again almost immediately. But Emma refused to give up. She tried again the next day and sat on the edge of the bed a little longer. And the next day, she sat for even longer. Eventually, Emma was strong enough that she was able to actually stand up, albeit she had to hold on to her mom for support. And then it wasn't long after that that Emma was straight up walking out of her room

and standing in the hall without her parents' help. Finally, Emma managed to make it all the way down the 60-foot-long corridor to the hospital chapel, and there Emma tasted her first solid food since she'd been hooked up to the ECMO machine. It was just a communion wafer, but Emma could not believe how good that dry stale cracker tasted. One morning, after more than six months at the Mayo Clinic, Emma's doctor came into her room to review the latest readout from her ECMO machine. As he walked over to it, he smiled down at Emma, who was in bed tapping on her phone.

The doctor felt so bad for Emma because she was in this impossible situation, but he was also very proud of Emma for really handling this situation with grace. She was so optimistic and so positive, even though most people would be totally devastated and depressed. The doctor looked at the numbers from the ECMO machine and had to do a double take. He wondered if he was actually misreading the data. Emma looked up from her phone and asked him what was going on. And Emma's doctor told her that her blood pressure, heart rate, and blood oxygen levels all seemed to be improving. He had no explanation for why this was happening, but given the numbers he was seeing, Emma's organs might have recovered enough

to function without the help of the ECMO. Doctors still had no idea what had made Emma sick in the first place, but almost miraculously, she appeared to be getting over it. After more than six months on the ECMO machine, the tubes in Emma's body were finally removed and she was officially disconnected from the machine. She never got a transplant because she didn't need one. Her organs had mysteriously recovered all on their own. Finally, on a spring day in 2013, Emma left the hospital for good. She had been in the hospital for a total of seven months with a mystery disease that had baffled some of the best doctors in the world.

Now, Emma could return to normal life as an active teenager. But a dark shadow hung over Emma. The doctors had never figured out what was making her sick, so what was to stop it from striking her again or somebody else in the future? Two years later, Emma and her parents returned to the Mayo Clinic for a checkup. She'd been coming every six months since being discharged, and so far there were no lingering issues from her mystery disease. Emma cheerfully greeted the medical staff as a nurse led her down the hospital's halls into an

exam room. While the nurse took Emma's vitals, she remarked how happy all the staff was that Emma had made this full recovery, but then the nurse's face grew serious. The nurse told Emma that there was actually a 12-year-old girl at the hospital currently being treated for the same bizarre symptoms that Emma had experienced. Her lungs had stopped working and nobody knew why, and just like Emma had been, this 12-year-old was currently hooked up to an ECMO machine while awaiting an organ transplant. Emma was shocked to hear this. She held back tears as the memories of her own time on the ECMO machine came flooding back to her. She wanted to do everything she could to help this girl, and so Emma asked if maybe she could meet with the girl's parents.

And sure enough, a couple of hours later, Emma and her parents sat down with the 12-year-old girl's parents in the hospital cafeteria, and over some hot coffee, they compared their respective histories. At first, the two girls' cases didn't seem to actually have that much in common. But then, Emma remarked that she hoped this other girl at least didn't have the same skin problems that she, Emma, had dealt with when she was younger. The girl's mom laughed and said that her daughter had acne, but not any worse than any other teenager. The mother said that she was taking some medication for it, but it was an extremely common medication.

It would turn out that both this girl and Emma were taking the same acne medication, called Bactrim, also known generically as TMP-SMX. The families would shake hands and go their separate ways, and then unfortunately, the 12-year-old girl would eventually die from the mystery condition. Three years later, in March of 2018, Emma, who was now 21 years old, sat at her desk in her modest one-bedroom apartment, drinking her morning coffee and reading the news on her laptop. She clicked on a headline and her jaw dropped. She could not believe what she was seeing.

It was a story about a 16-year-old high school student in Wichita, Kansas, named Zee Uwadia. She was an athlete who played on several sports teams, but then her lungs just suddenly stopped working, and now Z was relying on an ECMO machine to survive. Emma couldn't believe the similarities between Z's story and her own. It made Emma also think back to that little 12-year-old girl who died a couple years back. Since then, Emma had heard about another teenager experiencing the same thing, and she too had also taken Bactrim or TMP-SMX. Emma wondered if maybe Z, this person in this headline, was taking Bactrim as

well. For years now, this suspicion about Bactrim had lingered in the back of Emma's mind, and now she was more certain than ever that this common medication was what had made them all so sick. Emma found an email address for the doctor who was treating Z and she wrote to her immediately. Dr. Jenna Miller, who was caring for Z at Children's Mercy Hospital in Kansas City, Missouri, was catching up on paperwork when her inbox pinged. There was a message from a woman named Emma who said that she'd experienced something similar to Z and she wanted to know if Z had taken Bactrim because Emma had taken Bactrim and so maybe that was a commonality. On one level, Dr. Miller thought

it was highly unlikely that such a common drug could cause such a horrific reaction, Bactrim, or TMP-SMX, is the sixth most prescribed antibiotic in the entire United States. It's used to treat many different conditions. Then she remembered something. She scoured Z's files to confirm it. For several weeks before Z was admitted to the hospital, she had been suffering from a urinary tract infection. And the antibiotic that she was taking to treat it was Bactrim. Dr. Miller wrote back to Emma and told her that she very well might have just solved the mystery behind Z's condition and Emma's own horrible illness.

It turned out all the girls with this mystery illness had taken Bactrim, TMP-SMX, shortly before being hospitalized. And when the doctors examined images of the girls' lung tissue samples, they discovered that they had all suffered the same kind of tissue damage. For some reason, the Bactrim was systematically destroying the cells responsible for breathing. Over the next four years, Dr. Miller searched patient records across the country for people who'd suffered inexplicable respiratory failure shortly after taking this drug. They identified 19 other cases, mostly young men and women under the age of 20. Six had died, including Zee Uwadia. No one knows why the antibiotics sometimes triggers this rare lung destruction, but Dr.

Miller and her colleagues suspect that in rare cases, people's bodies have a potentially deadly allergic reaction to the drug. Today, Bactrim, or TMP-SMX, is still widely prescribed, but acute lung failure is now listed as a potential side effect. Emma is now 26 years old, and she works as a nurse who cares for patients who've just had heart and lung transplants. Emma knows that because of her reaction to Bactrim, which caused all this damage in her body, she can never be a serious athlete again. She gets winded after climbing a couple flights of stairs. But considering that she very nearly died, she doesn't mind at all. From Ballin Studios and Wondery, Thank you. cases, we can't know exactly what was said, but everything is based on a lot of research.

And a reminder, the content in this episode is not intended to be a substitute for professional medical advice, diagnosis, or treatment. This episode was written by Michael Selditch. Our editor is Heather Dundas. Sound design is by Matthew Cilelli. Coordinating producer is Sophia Martins. Our senior producer is Alex Benidon. Our associate producers and researchers are Sarah Vytak and Tasia Palaconda. Fact-checking was done by Bennett Logan. For Ballin Studios, our head of production is Zach Leavitt. Script editing is by Scott Allen and Evan Allen. Our coordinating producer is Matub Zare. Executive producers are myself, Mr. Ballin, and Nick

Witters. For Wondry, our head of sound is Marcelino Villapondo. Senior producers are Laura Donna Pallavoda and Dave Schilling. Senior managing producer is Ryan Lohr. Our executive producers are Aaron O'Flaherty and Marshall Louis for Wondery. hole for a mouth. It's flat, Taylor. It's completely flat. I don't know what that is. I don't know what kind of a head is flat. Comes the return of Dark Sanctum. What is that coming under the door?

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