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Patient Stories: Rebecca Lohsen

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Family lost precious daughter to methicillin-resistant Staphylococcus aureus (MRSA).

My name is Linda Lohsen. In August 2006, my family lost our precious daughter, Rebecca, to methicillin-resistant Staphylococcus aureus (MRSA).

Rebecca was 17 years old, a junior in high school. She was an honor student, working hard for A’s and B’s. She was on the high school swim team, and she could swim 20 laps of the pool and still have enough air left to talk to you when she got out. Who would ever have thought it would be her lungs that would fail her?

Last April, we took a short family trip to Pennsylvania. When we returned on Saturday, Rebecca complained of a sore throat—not bad enough to keep her from going to the mall for just one more pair of jeans. However on Sunday, Easter, she begged off from church—not like her—and on Monday she had a low-grade fever. My gut told me this needed attention.

The pediatrician’s initial diagnosis was mono, and Tuesday she slept most of the day. In the late afternoon, her fever was up, and she complained of back pain. Thinking that maybe the mono was affecting her spleen, we went back to the doctor. This time the diagnosis was pneumonia, and we were sent to the emergency room.

About two days into her admission, her doctor told me they had isolated MRSA. I knew enough about infectious diseases to be alarmed, but he reassured me that they had her on the right antibiotic from the start, and this should be no more difficult than any other pneumonia of this kind. And I had confidence that in this day of modern medicine they could fix almost anything, couldn’t they? But her CAT scans continued to worsen; someone said her lungs looked like Swiss cheese. Then came the chest tubes—first a small one, then another; finally, they needed to insert a tube in her airway because they could no longer keep her oxygen levels up.

And then there was that awful night when I awoke in her room (I never left her side) to a flurry of activity that was all too familiar to me from my days as an ICU nurse: Rebecca was “coding”—going into cardiac arrest. I don’t know how I ever got out of that room. I only remember standing in the hall, hysterical—how could this be happening! I don’t know how my husband ever made the drive to the hospital that night.

Rebecca survived that code. She was such a fighter, with a strength I never realized she possessed. Several days later the doctors recommended transferring her to a bigger hospital, in New York City. She was there for four months. My husband and I “set up house” there. One of us was always with her, usually both of us. We would sleep on a couch in Becky’s room. I had to return to work—we needed the medical benefits—so, I would get up at 6 a.m., go home, change, go to work for four hours, and then go right back to sit at her bedside. 

From the time of her code she was constantly sedated and could not communicate with us, although we always talked to her. Early in this ordeal, the sedation would sometimes lighten enough for her to weakly squeeze our hand, and one time I’m sure she tried to say “Mom” around the tube. But in the last months, she was too weak to move. 

By the time we were done, Rebecca had six chest tubes, a central venous line, a naso-gastric tube, about 12 different IVs running at all times, and countless other pieces of equipment. She was on a cooling blanket most of the time to keep her temperature down. We lived through bronchoscopes to remove obstructions in her airways, EEGs, cardiac ultrasounds—all done in her room because it was too difficult to transport her—and one emergency trip to the CAT scan because they suspected she had had a stroke. We signed papers and went before a review board to try an experimental implant of a one-way valve to block the most damaged lung.

Spring came and went, and then summer. We went through Mother’s Day, Father’s Day, Rebecca’s birthday, Memorial Day, Fourth of July. As each special event came we thought, this is the day it will turn around, she’ll get better. Finally, on August 9—my birthday—Rebecca had the ultimate healing, from which she will never get sick again, and she went home to heaven at 17 years, 1 month, and 23 days.

Why do I want to share all of this with you? Because for 15 years I was a public health nurse—I heard all about the diseases that MIGHT happen. And, perhaps like some of you, I became jaded. I felt that public health was all about sounding the alarm for things that never come to pass. I’m here to tell you this is real, this does happen, and it destroys lives.

Rebecca’s death has changed me, has changed all of us. Once I believed that the dangers that were out there would stay out there. That modern medicine can avert these dangers. I no longer have the confidence in medicine that I did. I believe we have made great advances, that there are cures to be had, but I’ve watched the dismay in the faces of doctors who are supposed to be the best in their field as they told me they didn’t have any more “cures in their bag.”

And I know that it truly is a PRACTICE of medicine, not a finished product.

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