This blog is a summary of a presentation by Elisa H. Ignatius, M.D., MSc, John Hopkins Center for NTM and Bronchiectasis, Baltimore, at the NTMIR Patient Conference on May 17, 2024, with additional comments from the author, Katie Keating, R.N., M.S.

This blog was reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.

Summary of Dr. Ignatius’ Presentation

The number of cases of bronchiectasis and NTM lung disease is increasing in the U.S., and the risk increases with age.¹ Managing these diagnoses can be difficult and often involves specialists, frequent visits, multiple medicines and work from the patient to perform daily airway clearance. There can be risks involved with treatment, such as appointment fatigue, drug resistance, side effects, anxiety and depression.² Current treatment plans can be time-consuming and tiresome. As research continues, there is hope for new medication and treatment options to improve everyday living. Dialing into a treatment plan may take time, but where there is a will, there is a way. Those with bronchiectasis and NTM lung disease are encouraged to work with their health care providers (HCPs) to find what works best for their disease.

Six Health Care Providers You May Encounter On Your Journey

• Pulmonologists — These doctors specialize in the lungs and are experts in diagnosing and treating lung-related health conditions. During the visit, an initial work-up will be completed, with follow-up visits every three to six months. A respiratory therapist (RT) may complete tests to measure how well the lungs are working and will review breathing medications and airway clearance techniques.
• Infectious Disease Doctor — Often the lung doctor and infectious disease doctors manage a patient together. Infectious disease doctors are experts on the medicines used to treat infections.
• Gastroenterologist — Problems involving your stomach, such as reflux disease (also called GERD), increase the risk of developing NTM lung disease.³ Reflux can cause swallowing issues and result in aspiration, the backflow or inhaling of stomach contents into your lungs. This specialist may consider running a few tests if needed.
• Allergist — These specialists can treat asthma and other allergic conditions. They test how the body reacts to food, medications and allergens, including mold, pollen, animal fur and seasonal irritants. When a body overreacts to something it is allergic to, it can cause swelling, irritation and increased mucus.⁴
• Immunology/Genetics — Genetics may play a role in how the body reacts to illness. These specialists’ study what the body is made up of and how the immune system reacts and defends itself. During her presentation at the NTMir Patient Conference, Dr. Ignatius recommended patients with nocardia, NTM or aspergillosis see these specialists to identify if a patient has a specific immune issue.⁵ Nocardia comes from bacteria found in the soil often affecting the lungs, brain and skin. Aspergillosis is an infection caused by a type of mold or fungus and affects the respiratory system.⁶
• Registered Dietician — What someone eats can impact their health, energy levels, healing and how the body responds to being sick.⁷ Dieticians can offer advice on what types of food to focus on to get the best health outcomes. When taking medicines like antibiotics, there may be special needs to focus on to help the body heal.

Depending on your needs, your HCP may consider sending you to see other specialists. Those specialists could include neuro-ophthalmologists, speech therapists, audiologists and thoracic surgeons.

Personal Note from the Author

You are not alone in this journey. Through my experience as a patient and a nurse, there were times I felt physically and mentally tired. When I was treated for NTM with antibiotics, some things I experienced were increased follow-up care, urology visits (due to an irritated bladder secondary to the multiple antibiotics for an extended period), and dental checkups (for possible nutritional deficiencies/potential for greater cavity formation since I was not able to eat three balanced meals due to fatigue and nausea from some medications). I was consumed with scheduling doctors’ appointments, getting insurance referrals and driving to doctors’ offices in many different locations.

It can be difficult when/if patient care involves many providers. Health care experts are found all around the U.S. and can require many visits to figure out a good treatment plan. It all starts with having a supportive primary care provider who understands bronchiectasis and NTM lung disease, along with a support system.

I did not have a supportive provider to start, and since I am a nurse, I thought I could walk the journey on my own. Looking back, I was wrong. The more brainstorming and support you get from your primary care doctor and health care team, the better you will be overall.

Bronchiectasis and NTM 360, a division of the COPD Foundation has created a Bronchiectasis and NTM Care Center Network (CCN). The CCN will help reduce the time to diagnosis and identify centers providing high-quality care for those affected ⁶. This new network of centers will help facilitate access to specialized care, and patients will be able to find a designated center located near them.

Helpful recommendations

• Keep a log of all your appointments, test results, and notes in a folder or on your computer to make it easier for you at your next appointment. This will help you get the most out of your appointments.
• Talk with your doctor about the next steps of your treatment plan. Ask questions about possible medication side effects.
• Find a team you like and trust.
• Remember, you are not alone. We are here to help you on your journey. Email questions or call us at 833-411-LUNG (5864).

References

1. Quinn TM, Hill AT. Non-cystic fibrosis bronchiectasis in the elderly: Current perspectives. Clinical interventions in aging. September 10, 2018. Accessed June 21, 2024. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6136918/#:~:text=Bronchiectasis%20is%20a%20chronic%20lung,all%20aspects%20of%20elderly%20care.
2. Heckman BW, Mathew AR, Carpenter MJ. Treatment burden and treatment fatigue as barriers to health. Current opinion in psychology. October 1, 2015. Accessed July 12, 2024. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4465180/.
3. Kim Y, Hoon Yoon J. Gastroesophageal reflux disease increases susceptibility to nontuberculous mycobacterial pulmonary disease. CHEST. September 7, 2022. Accessed July 21, 2024. https://www.sciencedirect.com/science/article/pii/S0012369222037047.
4. Grainger S. What is allergy? What is allergy? - Australasian Society of Clinical Immunology and Allergy (ASCIA). March 19, 2024. Accessed June 26, 2024. https://www.allergy.org.au/patients/about-allergy/what-is-allergy#:~:text=Allergy%20occurs%20when%20a%20person’s,tendency%20to%20develop%20allergic%20diseases.
5. Ignatius EH. 2024 NTM & Bronchiectasis Patient Conference. speech presented: Working with Your Team of Doctors Summary; May 17, 2024.
6. Aspergillosis. Mayo Clinic. January 6, 2022. Accessed July 12, 2024. https://www.mayoclinic.org/diseases-conditions/aspergillosis/symptoms-causes/syc-20369619
7. How your eating habits affect your health. National Institutes of Health. June 17, 2024. Accessed July 1, 2024. https://newsinhealth.nih.gov/2017/05/how-your-eating-habits-affect-your-health.
8. Bronchiectasis and NTM Care Center Network: General information. Bronchiectasis and NTM Care Center Network | General Information. 2024. Accessed June 21, 2024. https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/General-Information.