Janet Hoffman Credits a Team of Doctors and Musicians for Easing her NTM
Janet Hoffman was never one to sit on the sidelines, splitting her time between the sands of Vero Beach, Florida, and the mountains of Aspen, Colorado. A year of chronic coughing, night sweats and low energy, though, were taking their toll. When Hoffman visited her internist in Aspen and underwent a CT scan, she learned that she needed more information and only one place may have the answers – National Jewish Health.
“The internist said the results didn’t look like cancer or TB, but they clearly showed there was a lot going on in my lungs,” Hoffman said.
Both her internist and her son, who is a neuroradiologist at Duke Medical School, looked at the CT scan and suggested she talk to National Jewish Health because “they are best” when it comes to respiratory issues.
“In December of 2010, I had a mini vacation in Denver, spending my days in the hospital,” Hoffman said. “They tested everything. They wanted to know all about me, so they could figure out what was going on, and what caused it.”
Hoffman was diagnosed with nontuberculous mycobacteria (NTM), a non-contagious cousin to tuberculosis. The how and why people become infected with NTM is still unknown, but the battery of tests Hoffman received indicated she had two conditions common in people with NTM — gastroesophageal reflux disease (GERD) and the gene mutation responsible for cystic fibrosis (CF). CF is a disease that can thicken the mucous in the lungs, preventing the normal clearing of bacteria. Hoffman was told by her doctors that while she is only a carrier of CF, and does not have the disease, that single gene mutation could have made her more susceptible to acquiring the NTM infection.
The particular strain of NTM she was diagnosed with is called Mycobacterium avium complex (MAC). MAC and other NTM organisms are often associated with a constellation of physical findings known as Lady Windermere syndrome. The latter references the character in Oscar Wilde’s play Lady Windermere’s Fan, and how the disease tends to affect older female patients with abnormal lungs or bronchi.
No matter what it was called, the diagnosis terrified Hoffman.
A Diagnosis, Not a Death Sentence
“I knew I was very sick. It was everywhere in my lungs,” she said. “But the team at National Jewish Health put me at ease. They were so kind and explained everything to me. They told me it is not contagious, probably not curable, but I wasn’t going to die. They made me feel much better.”
While at National Jewish Health, Hoffman was told the NTM bacteria are often found in soil and water. Steam showers, whirlpools and steam facials are thought to disperse the bacteria into the air. Most people are unaffected when they breathe in the germs, but a segment of the population, like Hoffman, are more susceptible.
Hoffman’s medical team at National Jewish Health not only taught her about the disease, but everyday ways to reduce symptoms and avoid complications. She was taught how to clear her lungs and sleep in ways that reduce aspirations from GERD. The doctors here told her of data that indicates NTM might be acquired by aspiration of water into the lungs through silent reflux.
In addition to lifestyle changes, Hoffman was put on a cocktail of antibiotics, some of which have been used to treat tuberculosis. According to National Jewish Health doctors, taking multiple antibiotics simultaneously may reduce the chance of the disease becoming drug resistant.
“The way National Jewish Health approached my disease was important to me. There was a whole team of infectious disease doctors that looked at the test results, my lifestyle and health history. They then made the decisions together. By doing this, they have a collective knowledge that gives the patient the best treatment possible,” Hoffman said.
Hoffman returned home knowing that days of breathing easier were ahead of her.
“I don’t think of myself as sick,” she said. “I’m really not sick, but I know I have to be careful. I try not to get worn out. Though I’m not sure if I get tired because of the disease, the antibiotics or because I am 74 years old … probably a combination of it all.”
A year and a half of the antibiotics slowed the disease enough that she was able to get off the medications in 2012. Unfortunately, she started having night sweats again recently. So before the cough could develop, she reached out to her team at National Jewish Health. After new tests, they determined the NTM was growing again, and the best course of action was to re-start her on the antibiotics.
Music as Medicine
To improve her lung capacity and stamina, her son — who is not only a doctor, but also a musician — suggested taking up a wind instrument.
“I have always loved music. My husband and I attend the symphony, opera and orchestra regularly,” she said. “I never pursued playing music until I needed to for health reasons. My life was already full; I also dabble in painting and figurative sculpting.”
Hoffman began taking classical flute lessons, and didn’t stop even when her teacher moved to Paris.
“I still have my lesson every week. It is just over Skype now,” she said. “It makes me feel very young and with it.”
The music she plays is not easy. She is constantly working on pieces from Bach, Telemann and Debussy.
“My teacher has opened a whole new world to me. She pushes me beyond my ability, and I struggle through it,” Hoffman said. “If it gets to be too much, I put it aside and work on something else. When I come back to it, it doesn’t seem too hard.”
Subsequent tests have shown that playing the flute has increased Hoffman’s lung capacity.
“I return to National Jewish Health every six months for a CT scan, blood work, sputum and spirometry tests,” she said. “The next morning I meet with Dr. Shannon Kasperbauer to go over the tests and anything else that is bothering me. She is my lung doctor, but she cares about all of me. She is a good diagnostician.”
Between visits, Hoffman easily logs on to the patient portal to schedule appointments or email Dr. Kasperbauer with any questions she may have.
Hoffman says because of flute playing and her care at National Jewish Health, her life is just as it was before she got sick. She walks regularly, does Pilates, sits on the board of a museum, takes art classes and plays golf and bridge.
“I can do anything I want; it is just a matter of age and time,” Hoffman said.
She attributes her accurate diagnosis and personalized care to the collaborative approach of the doctors at National Jewish Health.
“In my opinion,” Hoffman said, “if they ever figure out a way to beat NTM, it will be the team there at National Jewish Health.”
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