Antimicrobial resistance: Patient stories

Patient Stories

The faces of antimicrobial resistance

Braxe R.

A seemingly harmless ear infection turns into a life-threatening MRSA scare for a 2 ½-year-old boy.

My son Braxe R. was 2 ½ when he had what seemed like a recurring ear infection that we believe he contracted at day care. It would be treated, clear and then return. Finally, a doctor took a culture of the stuff leaking from his ear. I still remember the phone call telling us it was methicillin-resistant Staphylococcus aureus, or MRSA. I had suffered from many staph infections, so I was familiar with MRSA and was terrified when I heard the news.

The doctor prescribed several antibiotics in an attempt to treat the infection. Braxe wasn’t in any real pain, and the only symptom was thick oozing fluid in his ear. But my wife and I were fearful, knowing that with every failed attempt to cure the infection the situation became more critical.

Ultimately we took Braxe to Duke University Hospital’s infectious disease team and he was seen by Michael Cohen-Wolkowiez, MD, PhD, who saved Braxe and changed our lives. Dr. Cohen-Wolkewiez said Braxe had to be admitted to the hospital, which was frightening. I believe the first course of medicine was vancomycin administered through an IV, not an easy thing for a 2 ½-year-old. Braxe was not allowed to leave the hospital room for the week he was there, which was difficult in itself. It was Halloween, and he had to dress up in the room and watch from the doorway while the other sick kids marched by in their outfits, which was heartbreaking. The next day was his older brother’s birthday, and we celebrated in the confines of the hospital room.

I had to sit with Braxe while he was placed on a machine for a CT scan. I will never forget his look of fear and confusion. I also remember feeling helpless and fearful as he was placed under anesthesia for a procedure.

After a week, we were able to take Braxe home, but three times a day for three hours at a time we had to hook him up to the IV to administer the medication. Just hooking him up to the IV was extremely stressful. There was an intense process of sterilization, and we were terrified that we would do something wrong that would make the situation worse. It was challenging having an active 2 ½-year old running around while being hooked up to an IV – similar to chasing a puppy on a leash.

After two weeks of that, Braxe was tested to see if the MRSA was gone. It wasn’t, which was crushing.

We tried to be hopeful and positive, but we felt as though we were out of options. Doctors told us they wanted to try a new drug that could help, but noted it could damage Braxe’s internal organs because it wasn’t made for small children. We were not overly optimistic that it would work, but thankfully, it did. The MRSA was finally gone.

We believe Braxe’s inability to hear out of one ear at a time when his speech was forming caused him to develop speech problems. He still has issues with certain sounds. My wife and I both struggled emotionally during this time and the fear made a lasting impression on us.

We’re thankful we have had a happy ending. But the next child may not be so lucky.

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Peggy Lillis

A mom from Brooklyn dies from complications of a condition brought on by antibiotic use.

On Tuesday, April 13, my mom had a root canal, and the dentist prescribed the antibiotic clindamycin to treat an abscess. The next day, she felt fine. On Thursday, mom came home from work and said she didn’t feel well. Thinking she caught a bug from one of her students, she still went to her class that night.

The following day, though, my mom stayed home from work, which is something she almost never did. She ended up in bed all weekend with what she thought was a stomach virus. On Saturday, she spoke to her doctor by phone. He prescribed, by phone, a prescription-strength antidiarrheal medicine and told her she should see a GI doctor on Monday. She began taking the medication later that day. We came to find out later that an antidiarrheal medicine is one of the worst things you can take when you have Clostridium difficile, or C. diff.

That Saturday, my fiancée Melissa’s grandfather suddenly passed away, and my mom told me to go take care of Melissa. We continued to check in on my mom – as did my brother, Christian, by phone – bringing her soup, tea and other liquids. She still had difficulty keeping anything down and seemed to be getting worse. Worried that she had been sick for several days, on Monday, Christian spoke to mom; they agreed that he would take her to the doctor the next day.

On Tuesday, April 20, my brother came over to take my mom to her doctor’s appointment. But she was very pale, somewhat weak and dizzy. Worried about dehydration, we decided that she should be taken to the hospital instead, and we called 911. The medics arrived to take her to the hospital and discovered that, despite her still being up walking and talking, her blood pressure was dangerously low. This was the first sign that something was seriously wrong.

Christian called me at the wake and told me to come to the hospital. Upon arrival at the hospital, the emergency room physicians had determined that my mom had a massive infection, later determined to be caused by Clostridium difficile, which was brought on by antibiotic use. Despite being lucid, and telling us she was fine, my mom was in septic shock. They began fluid and antibiotic therapy. Christian and I called our family to tell them that my mom was really sick. Because she was in shock, the doctors said she was unable to make her own medical decisions. So we decided that Christian would, with me and our Aunt Helen, who is a nurse.

The doctors started a central line for fluids and antibiotics, performed additional blood tests, scheduled my mom for a CT scan and performed a colonoscopy to determine if she had an obstruction. She was sedated and intubated to make sure her airway wasn’t compromised during the procedures. The doctors continued treating my mom with IV antibiotics and other drugs, and told us that if she didn’t respond by morning they would do surgery to remove her colon “in an attempt to save her life.” It was at this point that we realized that what we initially thought was the flu only four days ago could ultimately cost my mom her life. Even though the doctor told us to go home and get some rest, that he would call us if surgery was necessary, we stayed as long as we could, surrounded by mom’s brothers, sisters, cousins and close friends. Even some of Christian's and my friends. Eventually, we all went back to our house to try and sleep, and pray.

At 6 a.m. the next morning, the doctor called Christian and told us to get to the hospital. My mom had not improved overnight and surgery was necessary. The doctor told us that she was so ill he was afraid she wouldn’t survive surgery, but that she would very likely die from sepsis without it. We consented to the surgery, which my mom survived.

From late morning until the afternoon, it seemed that she was improving. But around 4 p.m., her vital signs started to deteriorate. The doctors put her on 100% oxygen and provided additional drugs to support her blood pressure. She continued to decline throughout the afternoon.

At 7:20 p.m., the ICU doctor informed us that my mom had passed. She had gone into cardiac arrest. They had tried to revive her several times to no avail.

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Timothy Mok

A University of Kentucky pharmacy resident falls sick from E. coli while at his residency rotation in Maryland.

During his second year of hematology and oncology pharmacy residency at the University of Kentucky, Timothy “Timmy” Mok traveled to Maryland for one of his rotations to learn to practice in a real-world environment. A month into the rotation, he began to feel extreme stomach pain. He went to a hospital in Virginia, where he was diagnosed with a perforated appendix and was told he would need surgery.

Before the surgery could occur, however, doctors discovered an abdominal abscess and said it would need to be treated first. Doctors placed a drain over the site of the abscess and fluid was collected and tested. The culture showed he had an infection caused by extended spectrum beta-lactamase positive Escherichia coli, or E. coli, as well as resistant strains of two other bacteria. This particular strain of E. coli is highly resistant to a wide variety of antibiotics, making these infections especially difficult to treat.

Due to the resistant nature of the bacteria, Timmy was placed in isolation in the hospital and had to stay in Virginia longer than originally planned, which was emotionally tough as he had no family in the area. Family members had to take vacation time to stay with him during his ordeal. Timmy was grateful to have visits from new friends he met during his rotation.

After many weeks, he was finally cleared to go home. His discharge was delayed because the resistant nature of the bacteria would require insurance approval of home IV antibiotics. He was not able to return to work until a month after he was hospitalized. This greatly impacted his residency training and added a large financial burden. He is still not sure where he may have been exposed to the resistant bacteria as he has does not have any prior medical conditions; he believes it may have happened while he was working in a hospital. Nevertheless, Timmy is very thankful and feels lucky the infection resolved.

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Marcus Glover

A healthy man is infected with a disruptive digestive bacterium during shoulder surgery.

One week after shoulder surgery, Marcus began having bad stomach pains and severe diarrhea. At first he ignored it, but eventually he began to worry when he had trouble staying hydrated and felt cold all of the time. He saw a doctor who thought he may have caught a virus from his mother, and was told he could get a colonoscopy or go home. He chose to go home.

Soon after Marcus returned home, his dog stepped on his stomach, causing shooting pain in his abdomen, so he went to the emergency room. The ER doctor gave him antibiotics and told him to rest. Marcus remembers being very sweaty and having very dark urine. He was suffering from extreme dehydration and the doctors ordered tests to identify the cause. Marcus lost 20 lbs. due to dehydration.

Doctors determined that during his shoulder surgery, Marcus had become infected with Clostridium difficile, an intestinal bacterium that seriously disrupts the digestive system, causing diarrhea and fatal dehydration if not identified quickly. Doctors tried several antibiotics before they found one that worked, and it took several weeks before Marcus was back to normal. He missed a month of work due to his illness, and he had to undergo special procedures the next time he had surgery for fear of re-infection. Prior to the infection, he had few digestion and stomach issues, but he now has had recurring problems that have sent him to the doctor several times.

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Meredith Littlejohn

A 19-year-old college hopeful and cancer survivor dies from an antibiotic-resistant infection.

Meredith Littlejohn’s parents, Steve and Stefanie, remember their daughter’s hope-filled optimism and amazing courage throughout her treatment for acute myeloid leukemia. She was first diagnosed in mid-November 2012 when she was a high school senior at the top of her class. Meredith, or “Mert,” had an exciting life ahead of her and would soon be accepted early to Emory University.

There were four rounds of chemotherapy over the next months, with brief home respites between rounds until April when she went into remission. Meredith and her family and friends were thrilled she was able to attend her senior prom and graduation. But, in June of 2013, she suffered a relapse. She resumed treatment and did well until August, when she contracted Candida, a fungal infection that is not uncommon in AML patients. Her infection did not respond to traditional treatments, and her infectious diseases doctors called colleagues across the country to find an effective treatment. Fortunately, they found an effective combination of therapies and her infection cleared.

Meredith spent her 19th birthday in the intensive care unit, where she still managed to throw quite the party with her friends. She was thrilled when a few of the hospital residents she thought were cute dropped by to wish her happy birthday, and she also received a tweet from an actress on her favorite TV show “Gossip Girl.”

In September, Meredith left the ICU and returned to the children’s oncology floor, but then she was diagnosed with a Pseudomonas infection under her arm. Her doctors monitored the infection as she had more cancer treatment.

Because the infection was resistant to newer antibiotics, doctors prepared to use colistin in case it spread to her bloodstream. Colistin is considered an antibiotic of last resort due to its extremely toxic effect on kidneys, which are already compromised in someone undergoing chemotherapy.

In early October, Meredith had a bone marrow transplant, which was successful. Her blood was 100% replaced by the donor’s blood, changing her blood type. However, infection still plagued her, and she began receiving colistin. As mucus plugs accumulated in her lungs, intubation helped her breathe and her doctors performed several plug removal surgeries. Meanwhile, although the infection spread to her lungs, her body responded extremely well to the surgeries, and her family and friends looked forward to rehabilitation.

To begin rehab, she had a tracheotomy – an incision in her windpipe – so she could get rid of her breathing tube and function during physical therapy. During the tracheotomy procedure, her blood oxygen levels dropped significantly and she went into septic shock because the Pseudomonas had reached her bloodstream. Although the doctors resuscitated her and did so again when she went into shock the following day, on the next day, the infection prevailed despite the team’s best efforts. Meredith died a year after her AML diagnosis – not of cancer, but of an antibiotic-resistant infection.

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Tatiana Chiprez Vargas

Just weeks after her wedding, Tatiana Chiprez Vargas began feeling ill and was admitted to the hospital. The doctors then found out she had contracted MRSA.

“June 7, 2014 was the best day of my life,” said Tatiana Chiprez Vargas of Stockton, California. “It was our special day, our wedding day. It was the most amazing day ever.”

Just a few weeks later, Chiprez Vargas was lying in a Northern California hospital’s intensive care unit fighting off a deadly bacterial infection.

In late June 2014, Chiprez Vargas, then 25 years old, had just returned from her honeymoon. She and her husband had tied the knot after dating for seven years and were both excited about their future together.

While at work one day, Chiprez Vargas began feeling ill. As the day went on, she felt more and more tired and finally decided to leave early. After trying over-the-counter cold and flu medicine, her symptoms did not improve and actually began to get worse. Her chest and back began to hurt and she could not lie on her back.

Not able to handle the pain any longer, Chiprez Vargas went to the emergncy room, where she was diagnosed with strep throat, treated with antibiotics and released. She couldn’t keep the medication down and with her health declining further, she went back to the hospital.

Chiprez Vargas was admitted to the ICU with a 103-degree fever, nausea, shortness of breath and chest pain. She began coughing up blood and her lungs began shutting down. Following blood tests and a consultation with several doctors, including an infectious diseases specialist, she was diagnosed with something commonly known as a staph infection. In her case, Chiprez Vargas had contracted a difficult-to-treat an infection called methicillin-resistant Staphylococcus aureus, or MRSA.

MRSA refers to a bacterium commonly found in humans, Staphylococcus aureus, which has mutated so that methicillin, the antibiotic that once could control it, is no longer effective. It can cause a variety of complications, including skin infections, pneumonia and bloodstream infections.

In the hospital, Chiprez Vargas was quarantined as doctors worked to treat her.

She was given an antibiotic that is active against MRSA and she began showing improvement. She was released on the Fourth of July but was readmitted shortly after with the infection still in her lungs. She also had contracted a secondary infection. Following a second round of treatment and testing, she was finally released.

How Chiprez Vargas contracted MRSA remains a mystery.

Today, Chiprez Vargas is doing well but has a chronic cough. She doesn’t remember much of her time spent in the hospital, but the ordeal has left a lasting impression. Any sign of a cold makes her feel like MRSA might strike again.

Looking back on her experience, she hopes that her story helps raise awareness around antibiotic resistance. “A lot of people don’t know what MRSA is until something happens. I think a lot of people still need to know what’s out there.”

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Brianna Strand

A woman from Washington with cystic fibrosis suffers years of worsening symptoms stemming from a skin infection.

Born with cystic fibrosis, Brianna Strand was used to being treated for the routine lung infections associated with the disease. Beginning her junior year at Washington State University, however, something changed. She had been getting ongoing CF treatment at the university facility, but after several extended courses of antibiotics, her lungs still did not feel normal. Because she had experienced a year-long decline in lung function, her doctor suggested she visit a specialist at the University of Washington.

The summer after her graduation in 2012, Brianna began receiving treatment at the UW health center, where infectious diseases physician Paul Pottinger, MD, DTMH, FIDSA, took a culture from her lungs and found Mycobacterium abscessus. M. abscessus is a hospital-acquired infection that usually causes minor skin infections, but in patients with chronic lung diseases, it can cause significant problems. Due to the infection and CF, Brianna began a combination of two to three antibiotics a day that, though cumbersome, was manageable.

In 2014, Brianna went back to UW after an infection flare-up. She had a high fever and could not keep food down for more than a month. Doctors constantly switched and adjusted her medications and dosages to try to get the infection under control without making her ill. Eventually, her doctor hit upon a combination that seemed to work. It took several months to get it under control, and her new drug regimen involves taking two intravenous antibiotics around the clock, as well as two orally each day.

Brianna must now have her lungs tested for infection every three months, and a nurse visits weekly to ensure the infection is not flaring up. Her health problems disqualify her from having a lung transplant because the risk of infection spreading to the new lung is too high. Equally devastating is that she and her husband cannot have children while she remains on the high doses of the antibiotics she is taking. She hopes a new antibiotic will be approved that will clear her infection, and allow her to have children and undergo a lung transplant.

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Catherine Duff

An Indiana woman undergoes fecal microbiota transplant to cure her recurring Clostridium difficile infections, saving her life.

I was already very sick when I had my first Clostridium difficile infection. It was the fall of 2005, I was driving home from a dinner and started having intense pain in my abdomen. I drove to the emergency room, had a CT scan, was diagnosed with severe diverticulitis, was put on antibiotics and had surgery to remove one-third of my colon. My pain became worse. I collapsed and was taken back into surgery because an abscess had burst, and I developed a serious blood infection. I was put on intravenous antibiotics, diagnosed with methicillin-resistant Staphylococcus aureus and developed C. diff from the antibiotics.

I woke up from the second surgery with a colostomy bag to collect waste products. It took five months of IV antibiotics before I got better. In May 2006, I had another surgery to reverse my colostomy and was given antibiotics. I developed C. diff again. It took five months of antibiotics to get better and allow me to return to work. I missed an entire year. During the next six years, I developed C. diff six more times. Each time it was worse and took longer to recover. Eventually I couldn’t work. For months at a time, I had diarrhea up to 30 times a day. I was bedridden and lost almost 70 pounds. I developed a fast heart rate and my kidneys started failing.

The seventh C. diff infection in April 2012 was resistant to antibiotics. After several months of trying different antibiotics, my doctors told me they had nothing left to offer, and that I should say my goodbyes to my family. Knowing modern medicine could not save my life was surreal. My family learned of an experimental treatment called fecal microbiota transplant. The treatment involves the donation of stool from a healthy, tested donor to the patient.

Because the doctors wouldn’t perform it, we did it at home, with my husband as the donor. Within four hours I felt almost normal. If I hadn’t experienced it myself, I wouldn’t have believed it.

I completely recovered, but within months had to undergo emergency spinal fusion. I was given IV antibiotics (against orders) and developed C. diff again. It was antibiotic-resistant. After several months, one of my doctors agreed to perform FMT by colonoscopy. It worked just as it had before and right away I felt almost fine.

While I recovered, I couldn’t stop thinking of the 30,000 Americans a year who die from C. diff who never had the chance of receiving the lifesaving treatment. So early in 2014, I started the Fecal Transplant Foundation to provide education, raise awareness and advocate for patients and for the science of FMT. Since then, I’ve become involved with several groups working on the worldwide epidemic of antibiotic-resistant bacteria.

Giving antibiotics needlessly contributes to the problem, whether for C. diff; infections that are viral, not bacterial; or infections that would clear up on their own. Another problem is the use of antibiotics in our food and water supplies and the increasing speed with which quickly evolving bacteria are developing resistance to even antibiotics of last resort. Please think twice the next time you are prescribed (or prescribing) antibiotics. Do you really need them? Maybe, if your life is at risk. Otherwise, probably not.

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Simon Sparrow

In less than 24 hours, 15-month-old Simon passed away from an undiagnosed MRSA infection.

My son Simon was a tranquil baby until he was 15 months old, when he started getting sick with various illnesses, such as ear infections and asthma. In April 2004, doctors prescribed antibiotics and steroids so Simon could breathe better after a throat infection. He seemed to be recovering fine until one morning when he awoke with a terrified shriek and fever and my husband, Jim, took him to the emergency room.

Doctors ran the standard battery of tests and decided Simon was asthmatic. When I joined Jim and Simon at the ER an hour later, Simon was sleeping on my husband’s lap looking angelic. But given how irritable he was, I knew something was wrong. Jim noticed Simon’s lips were blue as we left the ER. The doctors measured his oxygen level but said it was normal. We gave Simon albuterol via an inhaler. His eyes rolled back into his head, but we told ourselves, “He’s sick like any other kid his age. He’ll be fine.”

That afternoon Simon vomited the little milk he had had that morning and lay limply in my arms. He kept asking for “agua” (water in Spanish) and drank about four cups, only to vomit all of it. His cheeks and forehead were cold, and his lips were turning blue. His nostrils were flaring, and he was breathing heavily. I called the doctor and she told me to call 911. The EMTs applied an oxygen mask and said his oxygen level was fine. His eyes were wide open, and he was looking around, but he was not moving. I tried to convince myself that Simon was okay, but as soon as he was wheeled into the ER, I kept hearing, “Your child is very, very sick.” I became hysterical. Simon kept looking at me with his chocolatey-brown eyes and long eyelashes, repeating, “Agua.”

Simon was brought to the ICU to be intubated to help him breathe and connected to what seemed like 100 tubes, in addition to being given broad-spectrum antibiotics. I noted his eyes were open and asked the doctors if that was a good sign. I knew something was seriously wrong because the doctors seemed confused, scared, frantic and helpless. They took me to a room where one of the doctors told me Simon had an infection, but they didn’t know the cause. Simon’s blood pressure was dropping, and then he went into septic shock. One doctor encouragingly said, “Most kids leave the ICU.” Later she admitted Simon was going downhill.

By the time Jim returned to the ER, I knew Simon was dead. We gathered around his bed with many doctors. One said putting Simon on ECMO (the “heart-lung machine”) was “his only chance.” Jim and I desperately prayed for Simon to come out of his septic state. Doctors told us, “We’re not sure if your son is going to make it.” Simon became bloated, and his skin turned purplish and scab-like. He did not look like himself. Late the next morning, Jim and I decided to take Simon off of the ECMO machine, as he was not responding at all, and he was pronounced dead at 12:45 p.m., without a precise cause of death. The autopsy later confirmed that Simon died from community-associated methicillin-resistant Staphylococcus aureus. Neither my husband nor I had ever heard of it. MRSA is a virulent antibiotic-resistant bacterium. MRSA is only treatable with vancomycin – but first you must have a diagnosis of MRSA.

It seems unfathomable that a healthy, hearty and beautiful little boy could have been infected with a deadly bug and be gone in less than 24 hours. MRSA took my son swiftly. Now I have a window into what so many families experienced 50-plus years ago: the death of a child caused by a bacterium or virus. It is ironic that the same advances in science that helped us live healthier and longer lives led to the creation of bacteria that no longer respond to antibiotics. As long as we do not treat antibiotics as a precious resource only to be used in the most extreme cases we will continue to have a false sense of security in medicine.

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Tenzin Lobsang Kunor

A college student from Wisconsin is diagnosed with tuberculosis and forced into isolation from his family and friends.

Tenzin Lobsang Kunor was in the last semester of college, he had just been admitted to graduate school and offered an assistantship connected to the program. Best of all, he had recently begun dating the love of his life. He felt happy, carefree and enthusiastic about the future.

On Thursday, April 25, 2013, however, the carefree feeling changed with an unexpected phone call. During a routine meeting with his supervisor at his college job, she received a phone call from her supervisor. The health center was trying to reach Tenzin to inform him that he had been diagnosed with tuberculosis. He had been tested for TB because he had severe chest pains and a sore throat for several months, but he did not expect the diagnosis. What happened immediately after the phone call was a blur to him, but Tenzin distinctly remembers the car ride with his supervisor to the hospital in La Crosse. She did everything possible to make Tenzin feel more comfortable and continuously encouraged him that it was all going to be okay.

Tenzin spent a few days in the hospital in quarantine and ultimately was diagnosed with multidrug-resistant TB. During his time in the hospital, his partner and friends could not visit without wearing a mask. Many others sent words of encouragement, small acts of kindness that helped Tenzin to stay optimistic.

TB, or Mycobacterium tuberculosis, is an airborne infectious disease that is now the leading infectious disease killer in the world, claiming 1.8 million lives each year. MDR TB occurs when the bacterium is resistant to at least isoniazid and rifampin, the two most potent TB drugs. Nearly 30% of global annual deaths from antibiotic-resistant bacteria are due to drug-resistant TB.

After being in isolation in the hospital, Tenzin was sent home to Madison, Wisconsin, to live at home with his family, where he finished the rest of his undergraduate courses, although he was not able to participate in any graduation ceremonies. While at home, he was still in isolation and had to live in his parents’ bedroom since it was connected to a bathroom. Anytime he left his room, he had to wear a mask. The first few months he had a peripherally inserted central catheter, or PICC line, in his arm through which he self-administered medicine. The rigorous treatment regimen of many drugs caused a host of side effects, from nausea, loss of appetite, fatigue, restlessness and anxiety to hearing loss, temporary vision impairment and peripheral neuropathy, a type of painful nerve damage, in his feet.

On Sept. 2, 2013, 139 days after his initial diagnosis and confinement for isolation, Tenzin was officially deemed noncommunicable. That felt like such a glorious day to him, and he felt so free being able to leave his house without a mask. At the same time, he felt uncomfortable around others because he had grown accustomed to feeling that his existence was contaminating the air.

After isolation ended, and he was no longer able to infect others with TB, Tenzin continued his treatment for MDR TB. In January 2014, he also started graduate school, which he found to be incredibly exhausting, especially with the side effects of TB medications. Despite these challenges, he was able to complete his graduate degree while simultaneously enduring TB treatment – one of the things he is most proud of. On Aug. 7, 2015, after 28 months of treatment and over 8,000 pills, Tenzin officially completed the treatment for MDR TB.

To this day, Tenzin still feels stigmatized by his experience with MDR TB and does not always feel comfortable disclosing his experience. Nevertheless, he has since written several blogs – one featured in The Huffington Post; served as a consumer reviewer for the Department of Defense’s Congressionally Directed Medical Research Programs; presented at various trainings and conferences including the International Lung Health Conference in Liverpool in the United Kingdom; and has been an active member of We Are TB, a TB survivor group dedicated to advocacy and support. Tenzin is passionate about health equity; interactions of TB and race and class; advocating for better prevention, diagnostics and treatment; and continuing to share his experience in efforts to bring more awareness of TB and to eliminate the stigma that affects patients and survivors.

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Roger Poser

A man from Texas undergoes combination antibiotic therapy to combat an extremely antibiotic-resistant strain of Pseudomonas.

In July 2015, Roger had successful surgery for his lung cancer. His wife, Marsha, recalls that a week after surgery, doctors mentioned that Roger’s white blood cell count (a marker of infection) was rising slightly, but they weren’t worried. Roger felt fine and was looking forward to going home. He’d had the same procedure on his other lung the year before and recovered without problems.

Before he left the hospital, the infectious diseases team took a sample from his lung to check for infection, and the culture was positive for the Pseudomonas bacterium. He had trouble breathing, and his white blood cell count rose, a sign he was fighting infection. He was started on broad-spectrum antibiotics, but worsened, went into respiratory failure and was moved to the intensive care unit.

Roger was too ill to undergo tests to determine the cause of his respiratory distress. Doctors told Marsha he was unlikely to survive. While in the ICU, he went into cardiac arrest and was rushed into surgery. His white blood cell count continued to rise as the infection spread. Roger had a CT scan that revealed a large amount of bleeding near the bottom of Roger’s lung due to the Pseudomonas infection, which also was hindering his heart and lung function.

Doctors kept him stable overnight and the area was sprayed with antibiotics to prevent re-infection.

Three weeks after surgery, Roger’s white cell count remained unstable. Doctors determined some stitches from his lung surgery had loosened. His lungs continued to lose function, so he was placed on a respirator. Doctors suspected the bacteria were following the tubes in his lungs. Roger moved to another hospital and had an experimental procedure to place valves in his lungs.

After two months in the hospital, Roger was taken off the respirator and doctors focused on curing the infection. Infectious diseases physician Clare Gentry, MD, – whom Roger and Marsha credit with saving his life – determined he was infected with an extremely antibiotic-resistant strain of Pseudomonas. Doctors began to fear they would not find a combination of antibiotics that could control the infection, and they would have to do extremely risky surgery to remove all of the infected tissue from inside his chest.

Dr. Gentry prescribed ciprofloxacin, which was temporarily holding the infection at bay. Dr. Gentry suggested Zerbaxa, a combination antibiotic therapy that was not FDA-approved at that time to treat pseudomonas but had shown promising test results. Because Zerbaxa was very difficult to obtain, Roger was put on a waiting list. Several weeks passed, and his infection became increasingly resistant to the ciprofloxacin. Finally, doctors obtained the Zerbaxa. Within one day of treatment, Roger’s white blood cell count dropped dramatically and approached the normal range.

Doctors remained skeptical about Roger’s recovery as his infection could have developed a resistance to Zerbaxa as well. But his white blood cell count continued to improve, so Dr. Gentry tapered him off the Zerbaxa to see if the infection would return. It did not, and Roger was able to go home, nearly four months after his initial surgery. He has recovered, with no signs of re-infection. Roger’s immune system was severely weakened after extended courses of antibiotics, and he has been briefly readmitted to the hospital several times for minor illnesses. But he recently overcame a cold on his own without being hospitalized.

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Addie Rerecich

A healthy 11-year-old girl from Tucson, Arizona, spends months in the hospital fighting several infections and needs a lung transplant to save her life.

Addie will never be the same again, and there’s nothing I can do about it. I thought this as I sat in the hospital watching my 11-year-old daughter’s health rapidly fade. She had tubes running all over her body, a special machine had been brought in to help her breathe and doctors were preparing me for the worst.

I was not new to hospital settings, but I’ve never been invested on such a personal level. As a nurse, I remember learning about drug-resistant organisms, such as methicillin-resistant Staphylococcus aureus and Escherichia coli, in school. I preached to my patients and colleagues about the importance of using antibiotics properly to avoid promoting the development of life-threatening pathogens. However, as I sat there watching my little girl fight for her life, I realized, dear God, this is happening to us!

It all started on Mother’s Day 2011. I remember Addie being more tired than usual. I didn’t think too much of it since she was always such an active kid who loved to swim, run track and play softball. Those things catch up with you, and I figured on this day she was just worn out. About a week later, Addie mentioned to me that she had been having a lot of pain in her hip. I suspected a pulled muscle but made an appointment with our doctor for the next day just in case. We never made it to that appointment. Instead, her pain continued to increase, and she developed a fever of 103, prompting us to make a trip to the emergency room.

Doctors there saw nothing wrong with her white blood cell counts or other lab results that might indicate she had a bacterial infection, so they sent us home with ibuprofen and a reminder to see our doctor within three days. But Addie didn’t get better. I called paramedics and took her to the emergency room one more time before seeking a second opinion at another hospital. Addie walked into the hospital with me on May 19, 2011, and would not pass again through those doors until October, five months later.

Those months were a whirlwind, and it started immediately. Doctors ordered a culture of her blood and found her body was overcome with a Staphylococcus infection, a condition called sepsis. The infection had begun growing as an abscess in her hip muscle and spread into her blood, eventually causing a devastating bacterial pneumonia in her lungs. The abscess in her hip had gone untreated for so long that she had developed a blood clot deep in a vein near the abscess. Unfortunately, part of the clot broke away and caused a pulmonary embolism to her right lung – further complicating matters.

Within 24 hours, my little girl went from happy and healthy to being intubated and hooked to a breathing machine. Her small body was riddled with tubes and wires. She had surgery to remove the abscess from her hip. She was not getting better. Eventually, her lungs began to fail entirely, and she had to be placed on a machine called ECMO (extracorporeal membrane oxygenation), which circulated her blood and added oxygen to it, like an external lung. The hope was that taking the pressure off her lungs would allow them to heal. The machine is usually only needed for five to seven days; Addie was connected to it for three full months.

During this time, Addie’s doctors realized her lungs were not getting better – she would need a lung transplant to survive. However, they were unsure they could perform a transplant, because there were so much bacteria running amok in her body. She had developed infections caused by several drug-resistant bacteria – including extended-spectrum beta-lactamase-producing E. coli, Stenotrophomonas maltophilia and a resistant form of pneumonia caused by Enterobacter aerogenes. Addie’s doctors had run out of the most common antibiotics used to treat these serious bacteria so, in desperation, they turned to an antibiotic known as colistin. Colistin is very powerful, but it is also so highly toxic to the kidneys and other organs that doctors rarely use it. We started saying extra prayers.

Our prayers were answered as she responded to this antibiotic therapy and was cleared for a double lung transplant. The transplant went off successfully, but, in the end, our lives will never be the same.

When we left the hospital, Addie was in a wheelchair. She had lost the use of her left arm, had almost no vision in her left eye and had restricted vision in her right eye. She had limited use of her left leg. She had suffered a stroke. She had lost 30 pounds, almost one third of her body weight. She was so weak and debilitated that she couldn’t even turn herself side to side in bed. She had horrible scars all over her body from the various procedures, tubes and tests that ultimately saved her life.

Nothing can describe my feelings as a mother sitting helpless as I watched my little girl go from smiling and healthy to near death in less than a day. Antibiotic-resistant infections devastated my daughter’s life and our family’s health, well-being and finances. The health care costs from Addie's five-month hospital stay alone came to $6 million. We need to take steps now to ensure we are able to more effectively battle these infections in the future and that we have the antibiotics we need to do so. My family and I pray every day that no one else will have to experience what Addie went through.

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David Ricci

A 19-year-old from the Seattle area battles several NDM-1 positive antibiotic-resistant infections as he recovers from a train accident that cost him his right leg.

In just one moment, my life changed forever. In June 2011, I was 19 years old and working as a volunteer with HIV/AIDS orphans in Calcutta, India, through the social justice organization YWAM, far from my home in the Seattle area. One morning while I was walking to the orphanage, I took a shortcut across some train tracks to avoid the trash-filled roadside. All of a sudden, I was hit and dragged by a train, resulting in the brutal amputation of my right leg above the knee.

You never know when it’s the biggest day of your life until it’s happening. It was as if I was in the middle of a nightmare turned reality; I didn’t receive pain relievers until a week after the accident. When I received clearance to be airlifted back home to Seattle after a hazy three weeks of agony, I thought the worst of my journey would be over: Maybe I would need some antibiotics and other treatment, but I could get on with learning how to live with only one leg. Little did I know how wrong I was.

When I arrived back in the U.S., I soon learned that my wounds were infected with multiple drug-resistant bacteria (including Pseudomonas aeruginosa, Klebsiella pneumoniae, Morganella morganii and Enterococcus), several of which tested positive for New Delhi metallo-beta-lactamase-1, or NDM-1, a dangerous and recently discovered enzyme that makes bacteria resistant to a whole class of very important antibiotics. I had never heard of any of those bacteria, nor NDM-1, let alone thought that one day I would become infected with them. I remember when the lab results came back, the hospital staff was so concerned by the NDM-1 that everyone went into crisis mode, and I was immediately isolated in my room. After another surgery to remove infected tissue from my residual limb, I was put on broad-spectrum antibiotics as a precaution. They thought the infection was gone, so I was released and returned home to my family.

After four weeks at home, the pain still hadn’t subsided, and my doctor knew something was wrong. Another surgery was required, and the surgeon found the tissue was still infected with the highly drug-resistant bacteria. I began a course of strong antibiotics, including an antibiotic of last resort called colistin, which is rarely used because it’s so toxic. I felt my body shutting down from the toxicity of the treatment. My immune system, kidneys and liver were failing, and I could feel my body giving up.

Top doctors were giving me potent cocktails of the most powerful antibiotics available, and we were not sure if the drugs were even working. To know that the drugs that were strong enough to damage my internal organs might not be powerful enough to fight the bacteria they were intended to treat made me feel incredibly powerless.

I stopped the antibiotics at the end of September when the infection was thought to be gone. By December, it was back again in the form of a golf ball-sized abscess in my thigh. A biopsy revealed that the resistant bacteria were back full-force, and I underwent another emergency surgery to have more infected tissue removed. The antibiotics I took during this time were even stronger than the first course, and the side effects completely exhausted my body. The treatment was very similar to chemotherapy, making me vomit daily. It felt as though each of my organs was slowly deteriorating. I felt my body dying. When my white blood cell count dropped, I was so weak that normal daily activities were impossible.

Eight months after my accident, my wounds were closed, but my worries were not over. My life consisted of watchful waiting and praying that the infection, like some awful type of cancer, did not return. I had weekly doctor visits and monthly hospital visits so that we could keep a close watch on my progress. The learning process for my new prosthetic leg was slow going because I had to re-start my physical therapy treatments after every emergency surgery, which removed more of my leg tissue. Plus, losing more and more of my leg to these antibiotic-resistant infections made it harder to use a prosthetic, since I have less muscle to work with.

My battle is not over, but I’m thankful to be alive. I survived an impossible accident and continue to fight the deadliest of infections. My family, friends and faith keep me going, and it is for them that I stay optimistic. While things may never be the same as they were before that June morning, I am grateful for life. Recovering from a traumatic accident isn’t easy and saying it is exhausting is an understatement. The infections left my body weak and broken, but I continue to fight every day. I cheated death because I found life too beautiful to resist.

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Josh Nahum

A 27-year-old skydiving instructor in Colorado dies from an antibiotic-resistant Enterobacter aerogenes infection.

Antimicrobial resistance is one of the scariest prospects patients and their families now face. We should know: We lost our 27-year-old son Josh to a deadly antibiotic-resistant bacterial infection in October 2006.

Josh was a healthy, active skydiving instructor, attending college with passionate dreams of becoming a child psychologist. He was financing his own education by teaching other enthusiasts at a local skydiving school in Colorado.

During Labor Day weekend in 2006, Josh was enjoying the holiday doing what he loved best: jumping out of airplanes, something he had done more than 5,000 times before. But during a jump that weekend, he landed wrong, hitting the ground at around 55 miles an hour. The impact jackknifed his body, breaking his left femur and fracturing his skull. Amazingly, he survived these terrible injuries.

During his almost six-week stay in the ICU that followed, Josh developed a hospital-associated infection, methicillin-resistant Staphyloccus aureus, which the doctors were able to treat with antibiotics. Eventually, he was doing well enough to be transferred to a nearby rehabilitation facility to continue his progress.

Just as Josh was recuperating and on a hopeful path to a good recovery, he began to run a fever of 103 degrees. An infection caused by Enterobacter aerogenes, a type of gram-negative bacteria, was discovered in his cerebral spinal fluid. From there, despite doctors’ efforts to treat the infection, it spread rapidly, causing unbelievable pressure around his brain. The pressure eventually pushed part of his brain into his spinal column, paralyzing him, making him a permanent quadriplegic dependent on a ventilator to breathe.

Josh died two weeks later. He was just 27.

The tragic, unnecessary and lasting impact of the loss of our son continues to this day. Our family has never recovered from Josh’s death. We feel overwhelming sadness and a great sense of loss. No holiday dinner or special family celebration ever passes without the haunting reminder of a lone chair that remains empty.

Since Josh’s death, we have devoted our lives to bringing attention to the serious problem of health care-acquired infections and the need for better practices, education and solutions. We’ve learned that antibiotic-resistant gram-negative bacterial infections are a serious problem. Because they are resistant to virtually every antibiotic we have, they are one of our greatest public health threats.

Looking to the future, we hope patients and their families educate themselves on how to safely receive medical care before being admitted to a hospital to help prevent infections. Everyone who comes into contact with patients should practice appropriate hand hygiene. Lastly, we hope drug companies will invest in more research to fight these dangerous and sometimes deadly bacteria to prevent more people from suffering.

We look forward to a time when these infections no longer threaten to cut short the lives of the ones we love so much.

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Carlos Don

A healthy 12-year-old athlete from Southern California dies of pneumonia caused by a MRSA infection.

My name is Amber Don, and I lost my son Carlos to methicillin-resistant Staphylococcus aureus on Feb. 4, 2007, only 15 days before his 13th birthday. Carlos was the person I loved most in this entire world. He was my life.

Carlos was the picture of health. He was very involved with sports, and anything he tried came naturally to him. He fished, played football, raced motocross and tore it up on the skateboard. Football was Carlos’ best sport. His coach compared him to a gazelle. Carlos could outrun anyone.

Carlos left for sixth-grade camp healthy. I was with him that morning and watched him get on the bus. He had no fever, no sniffles, not even a cough. I had no reason to think anything was wrong with him. My husband picked him up from school when they returned four days later and immediately called me at work. His exact words to me were, “Amber, he's sick … he looks like death.” Carlos was ghost white and running a 104-degree fever. He had all the symptoms of a bad flu, so we gave him ibuprofen for the fever and Gatorade to keep him hydrated. The next morning, he started coughing, and he was lethargic. We literally had to carry him to the bathroom. I took him to urgent care, where he was diagnosed with bilateral pneumonia.

I remember sitting in the waiting room at urgent care knowing something was very wrong with him. He hadn’t held my hand in public for at least five years, and here was my 12-year-old son, sitting on my lap with his head on my shoulder, too weak to walk on his own. We were sent home, and I was told he would be fine once the antibiotics kicked in, and that it was just the pneumonia making him weak. I listened to them instead of my heart, and I will never forgive myself for that.

I rushed him back to urgent care the next day when he started hallucinating, per the on-call nurse’s instructions. They immediately called an ambulance because his oxygen level was so low. He was taken to Pomerado Hospital and immediately transported to Children’s Hospital for an overnight stay in the ICU. His breathing was becoming more and more labored by the minute, and they wanted him in ICU for the night for precautionary measures. I remember him lying there on the hospital bed as they were preparing him for the ambulance ride to Children’s. He was petrified but was trying to be so brave. I lied to my son for the first time in his life at that moment. He asked me if he was going to die, and I told him no. I told him he was going to be just fine, squeezed his hand and gave him a kiss.

Once we arrived at Children’s we were told they were going to induce a coma and put him on the ventilator to give his lungs a rest and help him recover. I gave him a kiss in the ICU room and told him I would see him shortly and that I loved him. He told me he loved me, too. Those were the last words I ever heard my son say to me.

We waited for hours when we had been told it would only be a 45-minute wait. I can’t even begin to explain the fear that started working its way into my heart. I was scared something had gone wrong, but I wasn’t prepared for exactly how wrong things were. We were called back into his room, and my son was hooked up to so many machines and had so many people surrounding him, we could barely see him. His lungs weren’t working anymore, and he was dying. No one could tell us what was doing this to him. All they could tell us was that they didn’t think he would make it through the night. Those are words that no parent should ever hear.

He did make it through the night and was placed on a heart assist device the following morning because his heart also began to fail. His body had been working so hard to fight this unknown invader the last few days that it started giving out. It had no strength left, and machines were the only thing keeping him alive. Blood flow had stopped to his arms and legs, and they were dying as well.

We had an answer that afternoon: MRSA. A disease I had never heard of was killing my child. Antibiotics were administered, and all we could do was wait and pray he recovered. For two weeks we watched Carlos deteriorate before our eyes, praying for a miracle with every X-ray taken of his lungs. We never left the hospital, and we never gave up hope. I stood over his bed day after day thinking the same thing over and over again: He is only 12 years old, and he doesn’t deserve this.

Dialysis machines were brought in, and he was put on a stronger ventilator while his body shut down one organ at a time.

At the end of our two-week stay at the hospital, it was determined that his lung tissue was dead, killed by this disease, as well as his upper intestines. His heart was too weak to function on its own as well as his kidneys. There was zero chance of survival, and we were left with the decision of removing him from the machines.

Carlos left us Feb. 4, 2007, at 2:20 a.m. while his father and I held his hand and told him over and over again how much we loved him. Our lives will never be the same. I miss him every single minute of every single day. Pictures and memories are all I have left of him, and you can’t give those hugs or tuck those in bed at night. The day I picked up his urn from the mortuary, I also picked up my daughters from school. While waiting in my car for the girls, I sat and watched my son’s friends laughing and playing around outside the school. While they were doing what normal 12-year-olds do, my son’s remains sat in a box in the back seat of my car. He should have been out there laughing and playing with them.

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Brock Wade

An active, sports-driven 9-year-old boy survives a terrifying invasive infection and pneumonia caused by MRSA.

“If we don’t operate right now, she’ll be dead in four hours.” That’s the last thing I remember hearing from the doctor before I underwent emergency surgery in 2005 because of a methicillin-resistant Staphylococcus aureus infection I contracted after back surgery. I was lucky to survive. Never in my wildest dreams did I imagine MRSA would re-enter my life four years later; this time it almost took the life of my oldest son.

Brock had always been a very sports-driven child. He played football, baseball and basketball. He’s full of life and loves to be active. That’s why it was so easy to overlook what seemed like a simple sports injury, without ever thinking it was the first sign of an infection that would nearly take his life.

In early August 2009, Brock, then 9 years old, went to camp and was riding a scooter when he had an accident. It did not seem like anything serious at the time, just some cuts and scrapes — road rash — on his leg. The staff at camp cleaned him up and sent him home.

Brock continued to be active, unaffected by the cuts on his leg. But one day, he started complaining of pain in his left arm. Having played football a few days before, we all just assumed he injured his arm then or maybe pulled a muscle when he was tackled. We just wrote it off as another one of the many “boys will be boys” injuries Brock had experienced being such an active kid.

However, that night he started complaining more about the pain in his arm. He could barely move it and slept only an hour that night. The next morning, he seemed fine and went out with his stepdad. Soon, though, my husband called saying Brock had passed out four times in 30 minutes, and they were now heading to the hospital.

The doctors initially told us he had just pulled a muscle, and then they said it was the flu, but I knew that couldn’t be right. His condition kept getting worse. We next went to Brock’s pediatrician, who took an X-ray of his chest. The X-ray showed Brock’s liver was enlarged, and there was an early concern he might have leukemia. It was during this round of tests that we found out Brock had a MRSA infection and was in septic shock.

Brock was immediately put on five different antibiotics, and an MRI was performed on his arm. The MRI revealed the MRSA had attacked the bones in his shoulder, causing an infection known as osteomyelitis. We were again rushed to another hospital, where the doctors told me the MRSA was so advanced that fluid was filling up in Brock’s heart and lungs.

At this point, I felt that I might not be taking Brock home ever again. Everything the doctors said to me seemed to be preparing me for the worst. Brock underwent five invasive surgeries, on his shoulder and in his chest to remove the fluid putting pressure on his lungs, heart and other vital organs. He managed to recover for about two days and then crashed again. More surgeries followed.

Finally, after a month in the hospital and against all odds, Brock recovered and was well enough to come home. He left the hospital with what looked like a shark bite missing from his arm, and he weighed nearly 30 pounds less than when this terrifying ordeal began.

MRSA has changed our family’s life forever. Brock still gets scared anytime he has a little cut or a scrape. As a family, we don’t take things for granted anymore. If our kids want to do something, and there’s any possible way we can do it, we do it together. MRSA took over our lives, and I pray that no other child or mother has to go through what we went through.

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Tom Dukes

The life of a healthy and active father in Southern California is torn apart by a painful and drug-resistant E. coli infection.

“I’ve got some bad news,” the doctor in the emergency room told me that Tuesday night in late 2009. “You’re not going home tonight. You’re going to the operating room right now.” My family was gathering around me. When I went to the OR, I said goodbye, and I was scared I wouldn’t see them again. Months later, I’m still trying to get my life back together after an antibiotic-resistant E. coli infection turned my world upside down.

My daughter had taken me to the ER earlier that day because I couldn’t drive — I was doubled over in pain. I had stayed home from work for two days after I began feeling this burning pain that started in my abdomen, spread to my back and just kept getting worse. It felt like my waist and back were on fire. The day before, I couldn’t touch my abdomen because it hurt so much. I had seen my doctor, who diagnosed it as diverticulitis (inflammation of part of my colon), because several months earlier I had had a case of diverticulitis, and I quickly improved after taking oral antibiotics. But the same prescription didn’t work this time. By that night, the burning and pain continued to get worse. The next morning, I felt horrible. I took my temperature, and it was actually lower than normal.

I’m a healthy, active person, which made this experience all the more frightening. I go to the gym Monday through Friday at 4:30 a.m. for a two-hour workout. I’ve been doing that for at least 30 years. I lift weights in the mornings, I go hiking along nature trails on the weekends, and I go to the beach and rollerblade. I work all week, and I’m very active all weekend. I love working in the yard and taking care of my home. Plus, I’m a single dad. All of this keeps me busy and in shape. But being healthy wasn’t enough to protect me from this tiny, but brutal, foe.

Much of that night in the ER is a blur. They took me in for a CAT scan, and I went back to the waiting room, where I got ice cold and started violently shaking. I was getting alarmed. The doctors told me I had a perforated colon, which had allowed ESBL-producing E. coli, an antibiotic-resistant superbug, to escape and cause the infection that turned my life upside down. In the OR, they removed an 8-inch chunk of my colon, called a colostomy.

I needed special antibiotics, which could only be given intravenously to treat this type of bacterial infection. Oral antibiotics wouldn’t work. Thankfully, the treatment worked. My infection is gone now, but I missed months of work, and I lost more than 20 pounds. I pray that this nasty bacteria is out of my life for good.

I’m left wondering how I became infected with E. coli and why it’s so resistant to antibiotics. I’ve lived a healthy lifestyle my whole life, but this tiny bacteria almost killed me, and it was a terrifying experience for me and my family.

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Rebecca Lohsen

A family loses their precious daughter to MRSA.

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

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?

That 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 Aug. 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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Joan Corboy

An Illinois woman nearly dies while struggling with a recurrent and drug-resistant C. difficile infection.

My name is Ed Corboy Jr. and in early December 2006 and January 2007, I watched helplessly as my mother, Joan, grew weaker and more dehydrated and nearly died. She was started on intravenous fluids and standard C. difficile antibiotics while in the hospital two different times that December. Her blood pressure dipped dangerously low on many occasions. She had lost almost 55 pounds in the previous five months, and she was so profoundly exhausted, tired and wasting away that it became apparent in early January she might die from this. She could hardly get to a bedside commode without two people helping her. Prior to this, she was able to walk to her bathroom with her walker on her own for years.

Her doctors had diagnosed C. difficile the previous November, in 2006, but the infection and its awful symptoms — diarrhea, severe weight loss, increasing weakness and worsening fatigue — returned repeatedly after two rounds of antibiotics in December 2006 and early January 2007 failed to kill the bacteria making her so sick.

That January, following several visits to the local hospital emergency room, hospital stays and a short time in a rehabilitation facility, my mother was placed in a skilled nursing facility in the Chicago area. Her family internal medicine doctors were trying to do the right thing, but she just kept getting worse and worse.

Just two years before this, the father of a good friend of mine, with serious heart disease, recent major heart surgery and a resistant C. difficile infection, had died, in part from this infection, which seemed to go on and on following his surgery. I feared my mother was nearing the same fate.

In desperation, I called the Centers for Disease Control and Prevention in Atlanta in early January, hoping to find some way to help my mother. A top C. difficile expert there explained the dangers posed by a sometimes deadly and drug-resistant strain of C. difficile bacteria responsible for thousands of deaths nationwide and even more around the world. He suggested contacting two infectious diseases doctors in the Chicago area who were C. difficile experts.

These doctors quickly increased the dose of the antibiotic my mother was taking that January. She began to slowly improve and moved back home to live with me after spending five weeks in a skilled nursing facility. But she was still very weak and continued to suffer from diarrhea every day as the expert doctors continued monitoring and adjusting her treatment.

I was encouraged but still worried. I wasn’t sure if my mom was going to beat this thing. We call my mother a “tough cookie,” and she really is: Thankfully, after a new round of antibiotic therapy proposed by her doctors in May 2007, she finally beat C. difficile for good. The infection’s symptoms were gone after a nightmare that had lasted more than eight months. I have learned that my mother’s experience is an all-too-common problem in the U.S. and around the world, as deaths and suffering caused by new forms of drug-resistant C. difficile are on the rise.

I am so thankful my mother’s doctors were able to help her battle this near-fatal infection. My mother and I both hope her nightmare experience can show others how serious antibiotic-resistant C. difficile is and the importance of preventing, diagnosing and managing these infections properly. Clearly, there is a need to educate doctors, health care workers and the public about C. difficile, other resistant infections and the need for effective diagnosis, treatments and appropriate use of antibiotics. Unless something is done, these bacteria are going to continue to wreak havoc on many people and their families.

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Dee Dee Wallace

A Wisconsin woman nearly loses her leg and her life to MRSA.

Like many mothers who are consumed with raising two young children, I rarely think about coming in contact with potentially life-threatening bacteria. Little did I know that the first six months of 2005 would have me fighting for my life and leave me permanently scarred.

It all began quite simply and was really nothing that anyone was alarmed about. While driving home from visiting family in Atlanta over Thanksgiving, I developed a boil on my backside. I had never had one before, and it was quickly becoming painful to even sit. I had to make a trip to my primary care physician for a routine exam anyway, so as part of the exam I asked her to evaluate the boil. She decided to lance it to aid in draining and relieve the pressure, which had become quite painful. She put me on an antibiotic to make sure that I didn’t get an infection. Over the course of the next couple of weeks, the site began to heal, and neither my husband nor I thought much about it.

On Sunday, Dec. 27, I was sitting on the couch enjoying the days between Christmas and New Year’s with my family when I felt what I thought was a normal itch on my knee. I scratched the area hard enough to break the skin, and the next morning the site was inflamed, much like what had been on my backside. I didn’t want to take any chances, so I made a doctor’s appointment. The doctor prescribed another dose of antibiotics and scheduled a follow-up visit on Wednesday. When I arrived on Wednesday morning, the area had become further inflamed and hot to the touch. They had me take an IV antibiotic while I was in their office and follow up the next day.

On Thursday, things took a turn for the worse, with the redness still present and getting worse. The doctor immediately sent me to see the surgeon on call, who lanced it and informed me that it was a serious infection that he would have cultured. The culture came back positive for methicillin-resistant Staphylococcus aureus.

Over the weekend things didn’t improve, and by Tuesday I developed red areas around the site but thought it was irritation from the constant changing of the tape on the wound dressing. By late Wednesday evening the red sores were beginning to develop white blisters, and I was experiencing deep bone pain. I went to see the surgeon on Thursday morning and was in for the shock of my life! He took a look and was immediately alarmed that I had developed flesh-eating bacteria (necrotizing fasciitis), and I would have to have emergency surgery to hopefully save my leg and my life! The prognosis was not good, and even with the surgery I would be on high doses of vancomycin. My surgeon conveyed that this drug was virtually the last resort for the infection.

The outcome was grim at best. I would at the very least have a sizable area of my inner knee removed with the possibility of losing my leg. The worst case was that I could become septic from the infection and die. The anxiety and fear were tremendous. I called my husband and tried my best to tell him what was happening but couldn’t get it out over the tears. The surgeon took the phone and told him how serious the infection was and to get to the hospital as quickly as possible.

Before the surgery, I had a bone scan to determine if the infection had spread into the bones. Fortunately, there was no evidence of the spreading, but we really wouldn’t know until I went under the knife. What a horrible feeling of not knowing. Only a few weeks before, I had been in good health and more concerned with my children’s colds. Certainly, the prospect of losing my leg had never occurred to me.

By the time the surgery was over, I had a 19-square-centimeter area about 2 inches deep of soft tissue removed from the inner side of my knee. The excavation of tissue went all the way to the muscle. It could have been worse, but I was going to have to endure the most painful experiences of my life as the wound was changed daily to remove the dead tissue. The wound had to be checked for any negative changes that would indicate the surgery had not successfully removed all of the infection. I had these twice-a-day changes for a week before I finally had a skin graft to close the wound. Once the graft was completed, I was released and put on intravenous vancomycin.

My ordeal was far from over. It was only after I insisted on a consult with an infectious diseases specialist that I began to see any progress. I learned what MRSA was, how it developed over time and the few options that are currently available to treat the infection. I was taught the importance of simple hygiene, and while we practiced it, we would need to be very aggressive in preventing further infection to my wound or other family members. Most alarmingly, the infection that I had developed couldn’t be traced to common sources such as a gymnasium, hospital stay or other known sources. I had developed what is known as a community-acquired strain, making it difficult, if not impossible, to determine the source.

Over the next two months, I had a host of complications, slowing my recovery and further threatening my health. I developed blood clots from the lack of mobility and resistance to the vancomycin. Tests showed that even though we were highly conscious of hygiene, the bacteria remained on my skin and in the wound. I developed blisters on my belly that were likely the result of the same bacteria being introduced through injections to prevent the blood clots. This landed me in the ICU, but fortunately no surgery was required this time!

It took months of physical therapy to regain the mobility and strength in my leg. Two years later, I still had little feeling in the knee area or the lower leg from the damage done to the nerves. I know I am one of the fortunate ones who survived this escalating health threat. I am always fearful of the slightest cut. I know that my options for treatment are slim at best should the infection ever present itself again.

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Ricky Lannetti

A healthy 21-year-old football player at Lycoming College in Williamsport, Pennsylvania, contracts MRSA and does not survive the infection.

My name is Theresa Drew; my only son was killed Dec. 6, 2003. His killer is still on the loose. It is called methicillin-resistant Staphylococcus aureus.

At the time of his passing, Ricky was in the prime of his life and on the threshold of his dreams. He was a 21-year-old senior football player at Lycoming College, and he was a good one. Ricky was as strong as an ox, and he ran like a deer. Best shape he would ever be in.

On a cold, windy, blizzard-like night, I drove for 5 1/2 hours to take my son to see the doctor, thinking he just had a bad flu or virus. Instead, we went to the hospital, where he spent the last 12 hours of his life.

It was the night before the NCAA quarterfinal game and the biggest game of his life. Ricky was a star football player. Ricky set two new records for the school that year: a single-season record of 70 receptions – five for touchdowns; and a Lycoming single-game record of 16 receptions, for 106 yards. Ricky was also earning himself a spot on the All-American team.

For 16 years of his life, he was used to getting bumped, bruised and tackled by kids twice his size. He always got back up. Ricky played football, lacrosse, basketball and baseball. You name it, he played it, and he played hard.

Ricky was a very active kid, who had a lot of friends and was always on the go. Ricky was a loving and fun kid, and his sisters looked up to him, he was their big brother. He was a leader among his friends. His physical, emotional strength and character gained him tremendous popularity. He was on top of the world at age 21.

The week leading up to that fateful day, Ricky was suffering with what appeared to be common flu-like symptoms. Come the morning of Dec. 6, instead of getting ready for the biggest football game of his life, Ricky laid in a Williamsport Hospital fighting for his life. While Ricky laid in the ICU hooked up to a ventilator and five different antibiotics going into his body, doctors tried to figure out how to save my son. His breathing was erratic. He was cold. He wanted to know when he was getting out, so he could play in the football game. I remember someone telling me two things that I will never forget. The first was that “Something is attacking his body, and we don’t know what it is yet.” I still had no doubt that he would be OK; Ricky’s strength and the medications would work just fine. Next, someone said, “It’s going to get worse before it gets better, and if he gets through tonight, he should be OK.” But what he was up against turned out to be even stronger than Ricky. By the time night fell, Ricky passed away.

The autopsy revealed Ricky had contracted MRSA, which entered his body from a pimple on his buttocks. They finally realized it was something too powerful for them to handle and tried to get him to a major hospital in Philadelphia, but Ricky never made it. They failed because there is not enough education, and the medical field does not know enough about MRSA, nor do they have the right drugs to fight it. A healthy 21-year-old should not have died from this. His sisters, father and I live every day thinking about Ricky and what he would be doing today if he was here. I am sure it would have been something great.

Like millions of Americans today, I had never heard of MRSA until it claimed my son’s life. During a time that I should have been planning for my son’s college graduation and helping him prepare for his future, I was burying my only son, who only days before had been the picture of health.

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Nicholas Johnson

A healthy 12-year-old from Texas nearly dies from a MRSA infection.

After 12-year-old Nicholas Johnson was injured at football practice, his parents, Janet and Dale Johnson, took him to the pediatrician. Nicholas was diagnosed with a bad shoulder sprain, given a sling for his arm and advised to take ibuprofen for pain. But one day later Nicholas was rushed to the emergency room with a temperature of 104.6 degrees. Now diagnosed with a bacterial infection, Nicholas was given antibiotics and some pain medication, and his parents took him home. But the antibiotics didn’t work.

Three days later, when his elbows and knees swelled up, Nicholas was back to the hospital. He was in respiratory failure and needed to be put on a ventilator. Finally, after being given multiple antibiotics, Nicholas was able to fight off the methicillin-resistant staph infection that had spread through his whole body. The hospital report says: “It’s a miracle he survived.”

Nicholas can now run as well as he used to. Because of the infection, he lost all of the hearing in his left ear, and he has some scars from his three operations, but otherwise, he is in great shape.

In 2004, Nicholas and his mother, Janet Johnson, traveled to Washington, D.C., from their home in Stafford, Texas, to be on hand when IDSA unveiled a report on the risk posed by drug-resistant infections and the need to develop new drugs to treat them.

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Caroline Moore

After summiting North America’s highest point, Caroline Moore contracts a staph infection during surgery.

Coloradoan Caroline Moore’s biggest challenge wasn’t her climb to the top of Alaska’s Denali (Mount McKinley), North America’s highest point; it was a microscopic germ.

An athlete since childhood, Caroline has played nearly every sport competitively and climbed some of the world’s biggest mountains, including all of Colorado’s “fourteeners” – mountain peaks 14,000 feet or taller.

The wear and tear on Caroline’s knees – including twice tearing her left ACL, MCL and medial meniscus – eventually left her with significant ligament and cartilage damage in her left knee. But an MRI following her painful 16-day expedition in 2013 to the summit of Denali revealed numerous injuries to her left knee due to the severe loss of cartilage. Her knee was bone on bone, and several doctors told her she’d never climb or ski again.

After two surgeries attempting to salvage her knee, things were looking more hopeful for Caroline and her relentless ambition to return to sports. That was until Caroline’s doctor determined that her knee was infected with a bacterium called Staphylococcus aureus a few days after surgery.

The infection and its aftermath threw Caroline’s life into complete disarray.

After being rushed into an emergency surgery and sent home with an intravenous line in her arm to administer powerful antibiotics, Caroline spent the next five months barely able to move her leg and in excruciating knee pain. Another surgery helped her regain knee movement but fractured her shin bone.

In March of 2015, Caroline had her eighth surgery, a bone biopsy to assess a bone infection, and her doctor concluded that the damage was irreparable, leaving her with limited options. She has since developed numerous staph infections under her skin. Constantly taking antibiotics to fight off those infections led to problems with her gastrointestinal system and extreme fatigue.

Determined to get back to being active, Caroline transitioned off of crutches and swims and bikes to stay active until she can have a special type of knee replacement for patients with prior staph infections and athletes looking to return to their extreme sports.

Not a day goes by without Caroline visualizing herself skiing or climbing. After a grueling four-year battle, Caroline still trains like an athlete in recovery, determined to use the power of visualization to allow her to return to big-mountain climbing and skiing again – and overcome the invisible bacterium that significantly altered her life.

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Kenna Van Kirk

A MRSA infection attacks a 9-year-old’s leg, lungs and heart.

Passionate about dancing and cheerleading and determined to be a chef when she grows up, Kenna Van Kirk had just turned 9 and was looking forward to Christmas when she became ill with a fever, nausea and vomiting. What her father, Eric, initially assumed was a stomach bug was in fact methicillin-resistant Staphylococcus aureus, an antibiotic-resistant infection that caused an abscess deep in her thigh, an infection on her heart valve, necrotizing pneumonia and sepsis (a life-threatening reaction to infection).

After six weeks of hospitalization, three intravenous antibiotics, three surgeries and 10 days on a ventilator to help her breathe, Kenna healed and returned back to her active life. But her frightening saga shows the seriousness of infections that are resistant to antibiotic treatment.

When Kenna first became ill, Eric took her to the emergency room after she began complaining of pain in her left leg, and her condition didn’t improve after a few days. But test results didn’t indicate a bacterial infection. Eric was told Kenna probably just had a stomach bug, so he took her home, only to return five days later on Christmas Eve when her she complained her whole body was in pain.

This time the tests showed she had pneumonia due to MRSA. She was immediately transferred to the pediatric intensive care unit at another hospital, where they determined she had sepsis and placed her on a powerful IV antibiotic called vancomycin, and she started to improve. Kenna and her 5-year-old brother, Maxson, opened their Christmas gifts a few days late. But the next day, she took a turn for the worse. She was having trouble breathing, and doctors discovered an infection on her heart’s mitral valve and transferred her by ambulance to a children’s hospital four hours away in St. Louis.

“When they said they were moving her to St. Louis, that’s when it clicked,” remembers Eric. “Two days earlier, they said she was fine, the cultures were negative, the pneumonia was clearing up and that she could go home soon. Then we got this news. We were shocked and scared.”

In St. Louis, Kenna was placed in the PICU and tests revealed she had necrotizing pneumonia, an aggressive infection that destroys tissue and was collapsing her lungs. She was given another antibiotic (IV daptomycin), sedated, intubated and placed on a ventilator to help her breathe. She also got a third antibiotic, ceftaroline, which is known to be effective against MRSA, but hasn’t been well-studied in children.

Eric said he’d heard of MRSA but didn’t know anyone who’d had it. Jason Newland, MD, MEd FIDSA, the infectious diseases specialist on Kenna’s case, explained that bugs are getting stronger and more resistant to antibiotics, making MRSA and other infections caused by resistant bacteria harder to treat.

“When you looked into the doctors’ eyes you could see they were very serious – they said, ‘She is extremely sick,’” remembers Eric.

Even though she was sedated, Kenna kept motioning that her leg was in pain. A computed tomography scan revealed she had an abscess and fluid around her thigh bone, the likely source of the initial infection, that had to be surgically removed. Once the doctors determined the infection in her thigh had cleared, they performed heart surgery to remove the infection on her valve. There was a risk she would have to have her heart valve replaced (necessitating surgeries every 10 years for the rest of her life), but the surgeon was able to repair the infected valve with Kenna’s tissue.

Kenna improved and was released from the hospital, only to return when her femur broke because it had been weakened by the infection. After a surgery to repair the bone using special flexible nails, Kenna returned to school, but had to navigate the halls in a wheelchair while her leg healed, and she continued on IV ceftaroline for six weeks.

A single dad, Eric struggled to pay the bills and battled with Medicaid to get Kenna’s treatment covered. “It’s worth it,” says Eric. “She’s still with me.”

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George Semakula

An experimental antibiotic saves a man’s leg and his life following an aggressive drug-resistant infection.

After his mother’s funeral in Moshi, Tanzania, George Semakula took a walk around the village where he grew up before flying home to Durham, North Carolina. During his walk, George was mugged, was pushed into a ditch and broke his left ankle so badly that the bone protruded.

He was treated locally for 10 days, flown back to the United States and had surgery at Duke University Hospital in Durham. There, doctors scraped infected flesh from the wound and fixed his bone using pins and plates. They also determined the wound was infected with three types of bacteria, and one of them – Acinetobacter baumanii – was resistant to virtually every commercially available antibiotic.

“The infection was spreading fast, and they said if they couldn’t stop it, they would have to amputate my leg,” said George, an independent truck driver who was then 57.

“I have a medical background, but I never imagined that there would be an infection that was so resistant,” said Miriam, George’s wife. “We kept our hopes high, but in the back of our minds, we knew amputation was a possibility, which was pretty scary.”

The infectious diseases specialists who treated George searched worldwide and finally found an antibiotic that worked – cefiderocol, a Japanese experimental drug not yet approved by the U.S. Food and Drug Administration. Because the drug wasn’t commercially available, a “compassionate use” approval had to be secured from FDA. George received three intravenous infusions of cefiderocol every day for four months.

After six surgeries, a muscle flap, fixation of his fracture with an orthopedic plate and four months of antibiotics, there was no sign of the infection, and George was healing well. Originally confined to a bed, he graduated to a wheelchair and then a walker, mostly for balance. Physical therapy twice a week strengthened his ankle, and walks for at least 20 minutes every day helped build his endurance.

“The antibiotic really worked, the infection is gone, and the healing is going well,” said George. “Now I can cook and do laundry, and Miriam and I go out to dinner and parties.”

George was fortunate. With infections caused by aggressive and highly resistant bacteria such as Acinetobacter, there are no guarantees of such a good outcome, said Vance Fowler, MD, MHS, FIDSA, an ID specialist and a professor of medicine at Duke University School of Medicine who treated George.

“Without the antibiotic from Japan, it would have been almost impossible to treat Mr. Semakula,” said Dr. Fowler. “He would have lost his leg, and possibly his life, if the bug had entered his bloodstream. When your best outcome is to lose your leg, that’s not great.”

He said George’s case and many others underscore the importance of supporting the development of new antibiotics. Increasingly, ID doctors are seeing infections that are either untreatable or are treatable only with antibiotics that come with major side effects.

“Infectious diseases doctors are seeing infections such as these in the United States daily, some coming from exotic points of origin, but many homegrown,” said Dr. Fowler. “Staying a step ahead of these infections requires a multipronged solution, including careful stewardship of our remaining antibiotic resources and providing incentives to pharmaceutical companies to be sure they stay active in antibiotic development.”

Antibacterial development currently is on life support, he said. Many pharmaceutial companies doing this work have abandoned antibacterial development, declared bankruptcy or announced massive layoffs.

“As Mr. Semakula’s case shows, antibiotics underpin modern medicine, and the fact is we desperately need new ones,” Dr. Fowler said.

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Antimicrobial resistance: Patient stories

George Semakula

The faces of antimicrobial resistance