Your Treatment: The Emphasis on You

As we said before, your active participation in your own treatment is key. Here are some of the considerations in making your treatment regimen about YOU and your health.

Taking Medicines – You will likely need to take multiple medications. Take all your medicines every day for as long as needed. Do not stop when you begin to feel better. The doctor will tell you when the bacteria have been controlled for long enough to stop taking your medicines. Your medications may have some side effects. Call your doctor to discuss any side effects to determine whether your medicines should be changed, or the dosage altered. If you are having a severe reaction, call your doctor or pharmacist immediately. Try to tolerate mild side effects. They are less harmful than the long-term effects of uncontrolled NTM infections. (You can learn more about medications and side effects, and print out a medication schedule to help you keep track.)

Types of Medicines

  1. Oral – pills or liquid medicines taken orally (by mouth), as directed by your doctor. Make sure you understand what time of day to take the medicines, and whether they should be taken before, after, or with meals. You may have trouble swallowing pills. When taking them, don’t tilt your head back. Instead, put your chin down to your chest and swallow the pills. You can also use soft food like applesauce; combine the pill with it and swallow.
  2. Intravenous (IV) – these types of medicines will be infused via a port or “picc” line and may be done in a hospital or at home. In some cases, IV treatments are relatively short in nature (a matter of weeks), but in some cases, may be of much longer duration. Be sure you know how often you are supposed to take these medicines. It is extremely important that you know how to care for any central catheter (port) or picc line to avoid introducing any other infections.
  3. Inhaled – some medicines may be inhaled directly into your lungs or nose, potentially minimizing side-effects or complications. These drugs include antibiotics, anti-inflammatory agents such as steroids, or bronchodilators. It is extremely important that you learn how to care for the nebulizer to maintain sterile conditions to avoid introducing other bacteria or infections into your lungs. Run the unit to clear and dry the tubing to avoid bacterial growth. Sterilize the nebulizer mouthpiece regularly, as directed by your doctor. Certain inhaled medicines may also be taken by metered dose inhalers. It is very important that your doctor or respiratory therapist show you the proper way to use these inhalers so that you get the benefit of the full amount of medicine into your lungs or sinuses.

Hearing, Vision and Other Testing – Some of the antibiotics your doctor may prescribe can affect your hearing or vision. By the time you perceive a problem, it may be too late, so regular checkups are recommended. Other antibiotics may damage your hearing initially, in the high-frequency range, so you might not notice the damage until it has progressed. Ask your doctor about getting baseline tests on your hearing and vision when beginning treatment for NTM lung disease. For your vision, it may be advisable to see a neuro-ophthalmologist because the vision damage may require special training or equipment to detect. Patients with certain heart conditions may be at risk of developing a dangerous irregular heart rhythm when taking certain types of antibiotics. Speak with your doctor about getting evaluated for these conditions and having regular EKGs if taking one of these medications.

Clear your lungs and sinuses (airway clearance) – extra mucus can collect in your lungs and make you sick. You and your doctor or respiratory therapist may have selected one or more ways to clear the mucus from your lungs. It could be chest physical therapy (chest PT) with postural drainage, use of an oscillating positive expiratory device, use of a pep valve or an inflatable or electric vest, or inhaled saline solution. The respiratory therapist will likely teach you additional clearance methods including a deep or “huff” cough. Whatever methods of mucus clearance you have discussed with your doctor, remember that every time you cough out infected mucus, there is that much less in your lungs to do damage and that much less for the antibiotics to overcome. Your doctor and respiratory therapist will decide which methods you should use and will teach you how to do them.

Your doctor may have instructed you to do a sinus wash once or twice a day. If so, be sure that you know the correct procedure. The purpose of a sinus wash is to get rid of excess mucus and to prevent this mucus from draining into your lungs. It is extremely important to avoid using contaminated equipment that could introduce some other infection. A respiratory therapist will show you how to do the sinus wash. (Click here for sinus wash guidelines)

Stay Well Hydrated – patients with NTM disease need fluids. Fluid is essential for thinning mucus secretions, which in turn helps you clear mucus from your airways. It also helps your kidneys and liver process medications. Try to minimize drinks such as alcohol and coffee, tea or any other drink that acts as a diuretic and actually results in dehydration.

Exercise – exercise is important to help maintain and improve endurance overall. Some patients report that the hard breathing associated with exercise helps them clear their lungs. Weight training can also help muscles become more efficient at extracting oxygen from your blood. Exercise is a recommended part of most treatment plans, but you must discuss the extent and type of exercise with your doctor before starting.

Take care of your mental health – Many patients with chronic illnesses have reported that the impact on their daily routine and social life leaves them feeling depressed. Dealing with NTM lung disease can be overwhelming, and you should use as many resources as you need for support. In addition to our online forum and local support groups, if you are feeling depressed, speak with your doctor about additional mental health support, whether it’s medication or a therapist.

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