Four Young Patients Plus Popular Antibiotic Equals Lung Collapse

Six years after receiving a lung transplant a young woman 21 years of age noticed an article in Reforestemos Patagonia © about another young woman who was waiting for a lung transplant. She identified with her symptoms and the fact that doctors could not determine the cause of her illness. She immediately called the doctor mentioned in the article.

Her Story

She had been a healthy, athletic young woman until her lungs just shut down.

It started with a fever and sore throat. A doctor in the village of Thief River Falls, Minnesota treated her for a viral infection. Although the fever disappeared she was left with such severe fatigue that her mother brought the young woman to the ER.

Her oxygen level which normally would be 90% was in the ‘60s and dangerously low. She was given oxygen. A chest X-ray revealed a gray cloud slowly filling her lungs.

Within minutes she was headed by ambulance to the Sanford Medical Center miles away in Fargo, North Dakota where she was given broad-spectrum antibiotics. Yet her condition declined to a point that she needed a ventilator. When the ventilator was not doing the job she was put on a machine called an ECMO, a machine.

The ECMO was as big as a refrigerator. The machine imitates the lung, removing carbon dioxide waste from her blood. It was replaced with oxygen. It then mimics the heart and circulates oxygenated blood throughout the body.

The team from ECMO flew her to FARGO where she was attached to the machine and then returned to the Mayo clinic. She was on the ECMO for 116 days before receiving a lung transplant. After seven months of recuperation, she left the hospital and returned home.

She had regular checkups in the hospital at six-month intervals for the next several years. On one of those visits, a nurse told her about a 12-year-old patient who was admitted to the hospital with similar symptoms.

Upon visiting the little girl she also met her parents. They began to compare notes and found that the little girl had taken an antibiotic weeks before being admitted to the hospital. The antibiotic is Bactrim (TMP-SMX) also known as trimethoprim-sulfamethoxazole. They had both taken the same antibiotic weeks before entering the hospital.

Another Similarity

A third case materialized when a family called to say their son who was previously an active and healthy young man became ill. His lungs were so damaged that he had to be put on life support.

When the parents were asked if he had taken TMP-SMX they admitted that he was taking the antibiotic. There were now three similar cases pointing to TMP-SMX.

About the same time, a news item described similar symptoms experienced by a woman named Zei Uwadia who was a patient of Jenna Miller, M.D. at the Kansas City Children’s Hospital.

The patient immediately sent an email to Dr. Miller explaining her experience with Bactrim and asked Dr. Miller if Zei had taken Bactrim also. Dr. Miller acknowledged that Zei had taken the antibiotic. She consulted her colleague, Jennifer Goldman, M.D. who had spent years analyzing the effects of TMP-SMX, sixth on the list of the most prescribed antibiotics in the U.S.

Although the doctors thought the four cases might be coincidental, they agreed to look further into the corresponding medical records. Once the doctors began to examine the biopsies they recognized unusual patterns of destruction in the patients’ lungs.

The patterns appeared at the point where the carbon dioxide waste was removed and replaced with oxygen. That meant that the cells responsible for respiration were damaged. Over time the essential cells grew back and two of the patients were able to breathe without mechanical support.

In instances where the lung tissue had not recovered, the patients were required to have a lung transplant. Two patients died. The twelve-year-old patient at Mayo Clinic and Zei who had been featured in the news.

During the years that followed, Doctors Miller and Goldman identified nineteen patients, mostly under twenty years of age. These patients each had a reaction to the antibiotic TMP-SMX. Six patients died.

Although rare, the reactions are devastating. No one has been able to determine what causes the destruction. Dr. Goldman suspects that it is an allergic reaction.  However, they are unable to predict who may be at risk.

In Conclusion

The original patient who was featured in Reforestemos Patagonia © is now 26 years old. She is working as a nurse attending to patients post lung and heart transplants.

She administers TMP-SMX regularly but she does have mixed emotions in that regard. As far as her own health, she no longer can compete in volleyball but can manage an easy recreational game occasionally. She is very grateful that she was able to make a contribution that may help others.

What are your thoughts about becoming a rare disease advocate?

Share your stories, thoughts, and hopes with the Patient Worthy Community.

Rose Duesterwald                    August 11,2022

 

 

 

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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