Newly Diagnosed

Receiving a diagnosis like bronchiectasis and/or nontuberculous mycobacterial (NTM) lung disease can seem overwhelming. Feelings of sadness, fear, anxiety and/or confusion are perfectly normal. Here we hope to provide newly diagnosed patients with the education and tools needed to navigate those “first steps” after diagnosis.

The following are suggestions for newly diagnosed patients:

• Communicate with your doctor about what happens next. Are your needs being addressed? Do you have questions about testing or follow-up appointments?
• Take all medicines as prescribed by your doctor. Ask your pharmacist if you have questions on how and when to take each medicine. Report any unusual side effects to your doctor. Keep an updated list of the medicines that you are taking with you in your wallet or purse.
• Develop a bronchial hygiene routine. Proper airway clearance is critical for the health of patients who have bronchiectasis and NTM lung disease. Work with your doctor to find the best techniques and/or devices that will help to clear mucus and prevent it from pooling in the airways.
• Improve your diet. Proper nutrition is an important part of overall wellness. Eating foods that are nourishing will provide your body with needed energy and help you to avoid illness. If you are losing weight or gaining weight rapidly, be sure to talk to your doctor about nutrition counseling.
• Exercise regularly. Maintaining your body’s strength and endurance will make it easier for you to complete your daily tasks. If you are uncomfortable with starting an exercise routine on your own, ask your doctor about pulmonary rehabilitation.
• If you smoke… stop. Patients with chronic lung conditions should do their best to avoid cigarette smoke and other irritants in the air.
• Avoid illness. Getting vaccines, proper handwashing, and early intervention when you get sick are important for staying well and keeping your lungs from worsening.
• Seek support. Many people who have a chronic illness report feeling depressed or alone. Seek support from loved ones and guidance from medical professionals if you feel sad or depressed. Join local support groups and online communities like BronchandNTM360social.

Visiting Your Doctor

The amount of time allotted for your doctor’s appointment is likely limited. Therefore, it is important to prepare for your appointment to maximize the time with your doctor. Below are some suggestions to help patients get the most out of their time at the doctor’s office.

Prior to Your Appointment

• Write notes or a list of questions that you may have for your doctor.
• Plan for a family member or loved on to attend the visit with you to listen and take notes on details of the office visit.
• Think about any medical equipment needs you may have (e.g., airway clearance device, oxygen equipment, scooter, shower chair, nebulizer).

During Your Appointment

• Be honest about your concerns and fears. Being truthful about your emotions will allow your doctor to address your worries and ease your fears.
• Share the notes that you have made. Doctors get a “snapshot” of your current health when you visit. If you have ongoing concerns, be sure to share those with them.
• Do not feel rushed. Doctors’ offices are extremely busy, so it is important that you utilize your time wisely by having talking points, however, never feel rushed. Your doctor wants to provide you with excellent care.
• Listen actively and provide feedback. As your doctor is making recommendations and prescribing medicines, provide feedback that you understand the course of treatment, and if you have questions – ask. It is important that you understand and follow your treatment plan as it is intended to help you manage your condition to help improve your quality of life and slow the progression of your condition.

Questions to Ask Your Doctor

1. What medicines will I be taking? What is the dosing level for each medicine?
2. When and how should I take each medicine?
3. What side effects are common for these medicines? What side effects should I immediately report?
4. What airway clearance techniques or devices do you recommend?
5. Should I take any over-the-counter medicines, supplements, or vitamins to help me manage symptoms?
6. Can I exercise? What kinds of exercises do you recommend?
7. How often should I schedule visits with you? How often should I repeat testing (e.g., chest x-ray, pulmonary function tests, sputum sample, lab work)?
8. What precautions should I take? Are there any activities I should avoid?
9. What is the easiest way to contact you?

Following Your Appointment

• Review your notes.
• Make follow-up appointments.
• Follow any new guidelines that your doctor recommended.
• Report any side effects that may occur as a result of the changes that you made.
• Learn how to access your medical record. Request and keep copies of all your lab work and test results.