Essie Keyser's Story

Essie KeyserTall, slender and active, Essie Keyser looks like the picture of health. However, a nagging cough told her something was wrong.

“I had a cough for 17 years,” she says. “I would cough for eight hours of every day; I had a terrible taste in my mouth. You could smell infection in my breath. But I didn’t look sick and no one would listen to me.”

She sought care from multiple experts in her hometown of Baltimore.  A doctor diagnosed her with bronchiectasis, a condition where the airways are permanently and abnormally widened and inflamed. “The doctor put me on antibiotics. He said it wasn’t fatal and that I would be fine,” she says.

“I would cough up so much that it would get caught in my throat. I thought I was going to black out,” Essie says.

Finally, the cough abated and Essie resumed her active lifestyle. However, two years later, she started coughing again.

“I started to get a tingly, fizzy feeling in my chest,” she says. “I started coughing up large amounts of blood.”

Essie’s doctor told her that a blood vessel had probably burst, and she was prescribed antibiotics and asthma medication.

“Every once in a while, I would get a lung bleed,” she says. “I had good days and bad days, and after two years it stopped.”

 

Nagging Cough Becomes a Health Crisis

An upper-respiratory infection started a cascading series of health scares that landed Essie in isolation at the hospital.

“It was a Friday night, and I thought ‘I shouldn’t be feeling this tired,’” she says. “On Saturday morning, I called the doctor’s office. I’ll never forget, the doctor on call said, ‘Essie, I don’t know you, but I can hear it over the phone. Go to the ER right now. If you wait until tonight, you will go to the hospital in an ambulance.’”

At the hospital, Essie was put in the cardiac intensive care unit because she didn’t have enough oxygen to keep her heart pumping. 

While there, she was seen by Charles Haile, MD, an infectious disease specialist. “He thought I might have tuberculosis (TB), and they put me in isolation,” she says. “They ruled out TB after several days, but they still didn’t know what was wrong with me.”

After laying in isolation for a month, she went home, but was so sick that she went back into the hospital and back into isolation.

“I got post-traumatic stress disorder (PTSD) from being in isolation so long,” Essie says.

She went to therapy for the PTSD, and doctors put her on a year-long regimen of a powerful antibiotic called tobramycin to treat her lung infection. 

“The treatments started working, and I got better,” she says.

However, a few months after she stopped taking the tobramycin, the symptoms started again.

“I could tell I was getting sick,” she said. “Everything was back.”

 

A Turning Point


NTM Research

Essie Keyser’s tall, slender body type puts her at greater risk of infection with nontuberculous mycobacteria (NTM) according to researchers at National Jewish Health.

Read more about their research.

She was surprised by what Dr. Haile told her next. “He told me they didn’t have anything else in their arsenal,” she says. “He told me to go to Denver – to National Jewish Health.’”

Essie came to National Jewish Health for a two-week appointment. Gwen A. Huitt, MD, a professor in the Division of Mycobacterial and Respiratory Infections who is ranked as one of the best doctors in America, led her care.

“Dr. Huitt thought that I had cystic fibrosis, but the genetic testing came back negative,” says Essie. “I have every symptom of cystic fibrosis, but I don’t have it.”

The doctors confirmed that she had a lung infection related to TB called nontuberculous mycobacteria (NTM). It is not contagious and is believed to enter the lungs or body through air, water or soil. Most patients cannot pinpoint when they may have been infected with NTM.

She was impressed with the care and the amount of information she received about her condition and treatment. Dr. Huitt put Essie on a protocol that included a vibrating vest to break up the mucus in her chest, an inhaler, steroids, a nebulizer and infusion treatments with powerful antibiotics.

“With Dr. Haile and my pulmonologist in Baltimore and Dr. Huitt, I have a good team now,” says Essie.

She recently returned to National Jewish Health for a check-up and her condition has drastically improved.

“I know that Denver is the ‘Mile High City’ but my husband and I are in the stratosphere from this great news,” she says. “I know if it was not for National Jewish Health and Dr. Huitt, my story would be markedly different.”