Tips for Those Newly Diagnosed Bronchiectasis and NTM lung Disease
Posted on January 25, 2023 |
This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.
Getting a diagnosis of bronchiectasis and/or nontuberculous mycobacterial (NTM) lung disease can seem overwhelming, to say the very least. It is important to understand the path ahead for you as an individual with a rare disease.
Communication with your health care provider
Communicating with your doctor about the details of your treatment plan is the key to the best care possible.
Before Your Appointment, prepare a list of questions you have for your doctor. Plan for a family member or a friend to attend the visit with you, if possible
During Your Appointment —Inform your doctor of whether you understand the course of treatment that he/she is suggesting. Be open with your major concerns. Understanding and sticking to your treatment plan can help you manage your condition and may result in better outcomes.
Questions to Ask Your Doctor:
- What medicines will I be taking and for how long?
- What side effects are common for each of these medicines?
- What over-the-counter medicines may help me manage symptoms as well?
- What treatment options are available to me (including airway-clearance devices that may help to break up the sputum and nebulizers that deliver inhaled medications that may assist with symptoms)?
- What precautions should I take? What infection-control practices? Home modifications? Lifestyle changes?
- How often should I schedule office visits and do repeat testing?
- What are some side effects that I should report immediately?
- How can I access my medical record? Ask for and keep copies of all your lab work and test results.
Medications and Treatment
Take all medicines as prescribed by your doctor. Ask your pharmacist if you have any specific questions about each medicine. Keep an updated list of the medicines that you and keep it with you at all times
Begin a routine airway clearance practice. Get assistance from your doctor or a respiratory therapist to find the best techniques and/or devices that will help to clear mucus and prevent it from pooling in the airways. Report flare-ups, changes in sputum production, increased shortness of breath, fatigue, fevers, and night sweats to your doctor.
Nutrition and exercise
Proper nutrition and maintaining your weight are necessary for overall wellness. Eating a healthy diet with nutritious foods will help you to feel your best and have the energy you need. Exercise when you feel up to it. A small amount of exercise is better than no exercise. Movement is so much better for our lungs, bodies, and minds than staying sedentary. Ask your doctor about pulmonary rehabilitation if you are in a weakened state.
Staying well and avoiding illness.
Vaccines, proper handwashing, and good infection-control practices are key. You may be asked to closely monitor your condition by your pulmonologist. Sometimes, no new medications may be prescribed when you are first diagnosed. Their suggestions are often based on your symptoms, your CT scan, and sputum results.
Learning more and seeking support
If you are interested in learning more by reading blog articles on topics such as reflux, dietary needs, infection control, and how they affect bronchiectasis and NTM lung disease click here.
Feelings of anxiety and being alone are normal at this time. Seek support from loved ones and guidance from medical professionals. Join local support groups and/or online communities like BronchandNTM360social and stay engaged on the site on a regular basis.
Research and clinical trials can be of interest to those that are newly diagnosed. The Bronchiectasis and NTM Research Registry is a database of bronchiectasis and/or NTM patients from multiple health care centers across the United States. The Registry helps to support research and assist in the planning of clinical trials for the treatment of non-CF Bronchiectasis and/or NTM lung disease. Visit the Registry webpage for more information or you can view a list of actively recruiting and ongoing studies to see if you might qualify for a clinical trial.
Many great resources exist that were not available a decade ago. The field of bronchiectasis and NTM lung disease has come along with greater public awareness. We are here to assist you on your journey. Please reach out on BronchandNTM360social and post any questions you may have. Learn as much as you can — empower yourself with the knowledge to live the best quality of life.