This blog post was written by Katie Keating, RN, MS, patient advocate

For many patients, having NTM can turn into a fulltime job—and then some. Outsiders cannot comprehend some of the tasks we deal with unless they have walked in our shoes. Many of us must continue the tasks, week after week for an extended period of time. Not only do we not get paid a penny for this work, we also are left to deal with diminished earnings from our previous jobs and careers, time lost with our friends and families, and an overall lower level of social life and recreational activities.

Some patients do get well, go into remission, and can resume a normal quality of life. Others are bombarded with recurrent NTM infections and or other respiratory infections on an ongoing basis.

To begin with, scheduling a doctor’s appointment these days can take up to 20 minutes after you give the scheduler your insurance information and demographics data each time you call, even if it is in the computer system from a few months ago. Hopefully, you will be able to do a telehealth office visit due to the corona virus threat. Doctor’s office staff will assist you with setting up telehealth visits if needed.

If you must enter a doctor’s office- please use all possible infection-control preventative measures while at the doctor’s office . Bring tissues or paper towels to open the doors, to push the elevator button. Wear your mask, double mask if you can tolerate it. Bring your own pen with you and Clorox wipes since you may have to fill out forms, touch the computer screen. Use gloves, but remember to dispose of them properly if you touch any possible contaminated surface. Wash hands as soon as you are finished , use a paper towel to get soap and to turn off the water faucet. Remember, do not touch your face.

Be prepared with a detailed history of the onset of your current symptoms—type of cough, time of day you cough the most, color and quantity of mucus, etc. Discuss coughing triggers, if any exist. Be prepared with the list of medications you are currently taking; discuss which ones are effective. Ask about the potential side effects of the medications and how your doctor will monitor you with lab tests and referrals to specialists, such as an audiologist or ophthalmologist, as needed. Mycobacterium compete with our body’s nutrients, resulting in weight loss and fatigue from not getting the nutrients we desperately need. Please report any drops in weight.

It is important to describe how your current symptoms impact your daily life. Just saying “I feel tired” is too broad, vague of a description. No one can really envision what your life is like behind closed doors if you do not describe how your life is dramatically changed by your illness. Many of us with NTM look normal; NTM is another invisible disorder for many patients. A detailed description of ADLs—(activities of daily living) and IADLs (instrumental activities of daily living) can assist you in describing how your daily quality of life is impacted. Below is a few links that may provide a foundation to assist you:

• A government form to assess functional capability, ADLs, IADLs, is available at https://www.ssa.gov/forms/ssa-3373-bk.pdf

Have a small spiral notebook with you to record suggestions that a doctor may not write down on a prescription pad. Be a prepared, organized patient. Ask any pertinent questions about new meds and diagnostic tests that may be ordered. Get in the habit of reviewing your questions, progress, and or regression from the previous visit. Make your next appointment before you leave in order to save time and energy on the phone. Call your doctor to push up your appointment if symptoms worsen.

Do not expect office staff to always follow through with a task that they mentioned they would take care of. Call the office in a few days if you feel the need to do so. There is a high turnover of office staff in many doctors’ offices; following up with every detail discussed at the office visit is your responsibility.

Seek a 2^nd or 3^rd opinion if you have a gut instinct that your specialist is not doing everything possible for you. There is a variation in knowledge base of physicians on NTM/bronchiectasis.

Advocate for yourself, be assertive, and do not be shy! You matter; you are important! Your quality of life in the years ahead depends upon your voice and the action steps you take. Seek answers to any other follow-up questions on NTMB 360 as needed. Befriend someone on NTMB 360 , private email that person, post a new question. Not feeling alone on this journey goes along way. Taking preventative measures to prevent reoccurrences is a practice of good self- care. Finding daily affirmations online or reading more about positive psychology helps, too. One of my favorite quotes is: “Don’t die with the music still in you” by Dr. Wayne Dyer. We all want the music to continue to play. Wishing you the best!

The COPD Foundation advises that before you make any changes to your medication or therapies that you first consult with your doctor.