Kay Williams and her husband, Joe, were enjoying a vacation in Canada when she had a “frightening” health scare that would eventually lead her to National Jewish Health.
“I couldn’t breathe,” Kay says. “We had hiked down to a lake. When we began to go back up to the car, I could only take a few steps before I had to stop to rest.”
They finally made it back to the car. After Kay rested for a while, her breathing returned to normal.
As soon as she returned home to Florida, Kay made an appointment with her doctor. A chest x-ray showed a “small gray area” in her lungs. Her doctor recommended that she see a pulmonologist.
The evening after Kay’s appointment, the pulmonologist called to tell Kay that she had nodules, or small masses of tissue, in her lung.
“He said, ‘I think you have MAC,’” Kay recalls.
MAC, or Mycobacterium avium complex, is one strain of the nontuberculous mycobacteria (NTM) family of bacteria. How and why people become infected with NTM is not clear. The germs, which are related to the tuberculosis germ, are found readily in water and soil, but they do not affect most people.
Kay had a bronchoscopy to confirm the diagnosis. Since she had no symptoms at the time, her pulmonologist recommended a watch-and-wait approach.
Kay joined a support group for people with NTM. “I met a lot of women who looked a lot like me and had the same issues,” she says.
In fact, research at National Jewish Health has shown that tall, slender women – like Kay – face a greater risk of infection with NTM.
Kay also learned that many of the women in her support group had been treated at National Jewish Health.
Four years later, when Kay developed a cough and frequent infections, her pulmonologist did another CT scan of her lungs. “He said that the upper-left lobe of my lung was trashed,” she says. “He also planted a seed about having surgery.”
After being hospitalized two times for hemoptysis, or coughing up blood, Kay’s doctor recommended that she go to National Jewish Health for treatment. “He told me ‘They are the experts,’” she says.
She came to Denver for a two-week appointment. Gwen Huitt, MD, MS, and Christopher A. Czaja, MD, MPH, who are both in the Division of Mycobacterial and Respiratory Infections, led her care.
Kay was impressed with the “open” approach to care at National Jewish Health. “It gives you confidence. The team of doctors would meet with me, and we would look at my CT scans and test results together,” she says. “They gave me all the time I needed.”
Kay began taking a regimen of powerful oral antibiotics to treat the infection in her lungs, and Drs. Huitt and Czaja recommended that she have surgery to remove the upper-left lobe of her lung.
Before she could have the surgery, Kay needed treatment with intravenous (IV) antibiotics for two months to further knock down the infection.
“I came back to Denver for the surgery, which went very well,” says Kay. She continued with the IV antibiotics for two months following the surgery.
After recovering, Dr. Czaja began to address her past history with hemoptysis, which had been coming from the right upper lobe of Kay’s lung.
“He knew that I was terrified that it would happen again and affect any future travel plans,” Kay said. Dr. Czaja showed her scans to interventional radiologists at National Jewish Health and an angiogram was done. They found two tortuous blood vessels, which were treated by embolizing, or blocking, those vessels. Kay was on the road to recovery.
She returned home to Florida, and after finishing the course of IV antibiotics, her first question was, “When can I swing a golf club again?”. Two days later, Kay was on the tee box. She and her husband have also started traveling again.
Now, Kay does “what I need to do to stay healthy.” In addition to healthy eating and working out, she does preventive treatments that includes wearing a vibrating vest every morning and afternoon to break up mucus in her chest, followed by lung clearance exercises.
“National Jewish Health was an amazing experience,” she says. “The doctors were wonderful – they didn’t leave a stone unturned. They gave me back my life.”
Learn more about how you can support patients at National Jewish Health