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Kristin Fisher: Nontuberculous Mycobacterial Disease

Kristen Fishcer - Nontuberculous Mycobacterial Disease

Kristin’s Story of Partnership, Resiliency, and the Power of Music

Kristin Fisher and her husband Don moved to Williamsport in 1996 to start their careers, and a family. Don began working as a music teacher at Williamsport Area High School, and Kristin taught 7th grade English at Canton High School in Bradford County. Although Kristin taught English, she shared a passion for music with her husband held — playing the piano and as a vocalist. Music was, and is, a mainstay in their life. They are also very active in their church with Kristin singing at baptisms, funerals, and weddings.

In 2002, Kristin retired from teaching to focus on raising her two children, Michael and Marcella. Around the same time, Kristin noticed she was having chest discomfort that felt different than the asthma she had lived with her entire life.

Pain and Difficulty Breathing

After her primary care doctor ran some tests, they found unusual and unexplained scarring in her lungs. She was diagnosed with bronchiectasis, a chronic condition which can make you susceptible to lung infections. Most people with bronchiectasis have periods of good health and then flare-ups of breathing difficulties.

“Singing is important to me, and during flare-ups I found it difficult to continue singing,” Kristin said. “I didn’t always trust my lungs when singing, which was frustrating.”

During a flare-up in 2007, she met William McCauley, MD, a pulmonologist at the UPMC Lung Center. In order to stay healthy and keep singing, Kristin worked with Dr. McCauley over the next several years to control her flare-ups and suppress infections.

Expanding Her Health Care Team

As time progressed Kristin could tell things were getting worse — her body was telling her the disease was changing. With a calendar full of singing engagements, it was important for Kristin to stay as healthy as possible.

“As things were getting worse, I wanted to add more brain power to helping me fight this disease,” recalls Kristin. “I talked with Dr. McCauley, and he agreed it could only help. That is when I went for a second opinion to John H. Hansen-Flaschen, MD, in Philadelphia.”

Dr. Hansen-Flaschen specializes in diagnostic dilemmas and second opinions in pulmonary medicine. After the initial visit, Dr. McCauley and Dr. Hansen-Flaschen formed a partnership to manage Kristin’s chronic disease. She was able to stay close to home to receive the majority of her care, but she also had additional expertise on her care team.

“From the very beginning Dr. McCauley and Dr. Hansen-Flaschen were in communication with each other about me and my care,” says Kristin. “I have a unique disease. I was lucky enough to find two doctors who listen to me and believe me — the three of us worked as a team.”

Pain She Couldn’t Ignore

In the fall of 2014, while she was singing at a wedding, she was out of breath and having difficulty filling her lungs. For the next several months Kristin didn’t get worse, but she wasn’t getting better. While she was singing at Palm Sunday mass, she felt a severe pain at the top of her lung.

“Dr. McCauley was out of town so I went to see my primary care provider, Kirsten Bubb,” says Kristin. “My disease is hard for people to understand. I look healthy most of the time, so people don’t always believe I am sick — but I knew this was different.”

She was diagnosed with pleural effusion, sometimes referred to as “water on the lungs”. When Dr. McCauley returned, Kristin had a CT scan which showed something abnormal.

“They knew something was wrong, but they weren’t finding out exactly what it was,” Kristin remembers. “Dr. McCauley was consulting Dr. Hansen-Flaschen, and they felt the next step was an invasive procedure — which I did not want.”

Kristin went home and tried to absorb what a procedure like that would mean for her, “I relied on my husband during times like this. I leaned on him a lot when we were trying to figure this out.”

A Rare Lung Disease

She got a call the next day — the lab found something abnormal. Kristin had a rare lung infection and was diagnosed with nontuberculous mycobacterial disease. coincidentally, Dr. Hansen-Flaschen is one of the nation’s leading experts on the diagnosis and management of nontuberculous mycobacterial disease and related lung infections.

Kristen explains the lab results, “I was thrilled I no longer needed an invasive procedure, but little did I know what this diagnosis meant for the rest of my life.”

Kristin’s disease is an unidentified immune defect which makes her exceptionally vulnerable to lung infections. These infections are caused by organisms that live in the water and soil but do not ordinarily infect healthy people and because of the scarring in her lungs, an infection had a lot of places to hide and grow.

Over the next three years, Kristin’s treatment would be adjusted depending on what type of lung infection she had — and she has had a lot of them. Each infection has a unique treatment based on the respiratory bacteria cultures grown in the laboratory at the hospital. This type of bacteria also grows very slowly, so it provides unique challenges for a laboratory. It can sometimes take over a month to identify the strain of bacteria and identify the treatment.

Keeping the Music Alive

While all of this was happening, Kristin continued to sing, “I was determined to keep singing. I would only say no if I physically could not do it. I was going to do everything I could to keep singing.”

Kristin’s disease isn’t easy, and some infections are harder to fight than others. She is constantly on antibiotics and has to take special precautions around dirt and water, where the bacteria can make her sick lives. If she can’t take a pill or inhaled form of antibiotics, she must be on intravenously antibiotics at home. Every day, she spends at least 40 minutes on lung treatments. She has been on and off different medicines to try to help control or suppress her symptoms. Through every treatment, her doctors would do their best to keep Kristin singing.

“They knew how important music was to me. They listened, and did their best to treat my disease in a way that wouldn’t cost me my voice,” says Kristin.

Customized Health Care Close to Home

During one of the many infections, she had laboratory tests done in Philadelphia. When the results came back, she noticed it said “Cystic Fibrosis (CF) patient” at the top of the results. She knew she didn’t have CF, so she found that interesting.

“I have become very good at reading my lab results and charts. It is great you can go online and read everything, but you need to understand what you are reading,” says Kristin. “During my next visit, I asked why my lab results said CF patient at the top. Apparently, the laboratory has special procedures for CF patients and they let the culture grow out longer to identify the bacteria.”

She decided to find out how her lab cultures were handled at UPMC and went straight to the source, Joy Gilson, the lab manager at UPMC. She knows Joy from the community, so she texted her and Joy immediately called Kristin back.

“I explained everything about me and my disease to Joy,” says Kristin. “She understood, she listened and she was compassionate.”

Joy left the meeting and got her lab team together to discuss options. Just a week later, Kristin was meeting with Joy and Jessie Faugerberg from the lab to talk about her care. Joy and Jessie called the director of the lab in Philadelphia to learn more. They shared the protocol for Kristin’s laboratory test, and UPMC adjusted their protocol for Kristin and other patients with chronic lung infections.

Compassionate Care

“I was overwhelmed by how they treated me and they listened to me,” Kristin said. “Having a lab locally that can diagnose my infection is so important to my quality of life. The lab results dictate the treatment I need, so having a lab that can communicate the results quickly and reliably to my team of doctors is life-changing.”

Through the process of treating Kristin’s disease, she has learned a lot about partnership and resiliency. She never stopped listening to her body and looking for answers. She relies on the partnership of two physicians and two laboratories, the strength of her family, kids, friends, and her church community — and the power of music.

Kristin describes music as life, “I will do whatever I can to live in such a way that is joyful. Everyone in my family finds joy and life in music, so it will always be central to how we live.”

A popular quote from Hunter Patch Adams rings true to Kristin, “You treat a disease — you win, you lose. You treat a person — I guarantee you, you'll win.”

Kristin found everyone treated her like a unique person, not a disease. She calls the partnership she has with two doctors and two labs in different cities a gift.

Kristin’s disease will never stop — there is no cure.

She says, “I will keep going and learning and looking for the best answers for me. I am only 47, so I have many years left to keep living and keep singing.”