Search  |  Index  |  Home  |  Glossary  |  Contact Us

Living With Asbestos-Related Illness
A Self-Care Guide

Self-Care

No cure exists for asbestosis, but taking care of yourself can help you maintain a more comfortable life. Some self-care tips and techniques follow.

• Stay away from smoke and smokers. If you smoke, now would be a good time to quit. Smoking can increase the rate of disease progression, and it also increases the risk of lung cancer. Even if you have been smoking for years—or you already have lung disease— quitting smoking now will greatly improve your health. The tracheal cilia will begin working again and help keep your lungs swept clean. The blood vessels will relax, allowing the blood to flow normally, so your heart will no longer have to work as hard. The lung tissue will become healthier and you will breathe easier.
  A structured program has a good chance of successfully helping smokers quit the habit. Recent trials using the nicotine patch and antidepressants have been shown to be more effective than counseling in helping smokers quit.
• Participate in respiratory therapies (such as bronchial drainage) as recommended by your doctor. Your doctor might recommend using an ultrasonic mist humidifier that assists in clearing secretions from the lungs. Respiratory treatments that remove secretions from the lung through postural drainage might also be used.
• Proper training and adherence to decontamination techniques can minimize the risk of infection associated with respiratory therapy devices.
  • Clean all reusable respiratory therapy equipment such as ventilator circuitry, nebulizers, aerosol tubing, and peak flow meters twice weekly. Consult your provider about cleansing routines for respiratory equipment.
  • All cleaned devices must be allowed to air dry thoroughly before reassembling for use. Moisture trapped in the devices can be a potential reservoir for bacteria, viruses and fungi
  • All ventilator filters should be cleaned and changed as often as the manufacturer recommends.

Oxygen. If your doctor has prescribed oxygen, you will have a liquid oxygen unit, an oxygen tank, or an oxygen concentrator. You will breathe the oxygen through either a mask or nasal cannulae (two short prongs that fit just inside your nostrils). The system will also have a humidifier to warm and moisten the oxygen.

It is a good idea to also have a small portable oxygen tank available in case of power failure.

Only your doctor can determine how much oxygen you need. You should never change the flow rate without instructions from your doctor. The medical supply company will show you how to set the flow rate and how to care for the equipment. Keep the supplier's telephone number handy so you can call if the system does not work properly.

Sometimes it is hard to tell whether oxygen is flowing through the tubes. If you have doubts, check to be sure that the system is turned on and the tubing does not have any kinks. If you still are not sure, place the nasal cannulae in a glass of water with the prongs up and watch for bubbles. If no bubbles appear, oxygen is not flowing through the tubes and you need to call your supplier.

Oxygen is very combustible. Be sure to keep your oxygen unit away from open flames and heat, including lit cigarettes, gas stoves, space heaters, or kerosene heaters.

When traveling around town, be sure to plan for an adequate supply of oxygen and know how much time you can safely travel between refills. Always allow for a 20%–25% safety margin to cover any unexpected delays. When traveling, keep the oxygen container upright and secure at all times.

Traveling With Oxygen

• Discuss your travel plans with your doctor to be sure it is all right for you to travel and to find out how long your trip can be.
• Contact your oxygen supply company about your travel plans. The company will recommend the equipment you need and help determine the time you can safely travel between refills. Get the oxygen equipment with which you will travel ahead of time so you can become familiar with how to operate it. Your supplier can also arrange to have oxygen supplied to you at your destination.
• Check with your insurance company. You may have to pay in advance for equipment and submit the insurance claims after you return home. Be sure to keep your receipts.
• Always keep your prescription with you throughout the trip.

Traveling by Bus

Bus lines do permit travel with oxygen equipment. However, to prevent any unexpected problems, check in advance. Most bus companies permit you to take one E cylinder onto the bus, but extra tanks are not allowed in the baggage compartment. You must be able to put your tank on and take it off by yourself.

Traveling by Train

Make reservations with Amtrak at least 4 days in advance, even for short trips. You may bring two cylinders, either size E or F, and the oxygen unit must be self-contained and not on wheels. On overnight trips, you must have a sleeper compartment, where you are required to stay while using oxygen. Meals can be sent to your sleeper.

Traveling by Ship

Cruise line regulations differ and are subject to change, so you must contact the cruise line regarding current rules. Some cruise lines permit you to travel only with oxygen cylinders and limit the number you may bring on board. Be prepared to supply the following information from your doctor: a prescription stating the quantity of oxygen and the flow rate, a letter describing your diagnosis, and a statement that you are approved for travel.

Traveling by Plane

Regulations vary from one airline to another and are subject to change. Always call ahead of time to inquire about current rules. Some airlines will not permit passengers to use oxygen. Others airlines are willing to provide oxygen if you make advance arrangements, but you must use their oxygen supply. Airlines do not allow passengers to bring oxygen on board the plane. Always bring your own nasal prongs: some airlines use only simple oxygen masks, which allow carbon dioxide buildup. Also bring a nipple adapter that fits all tubing.

You must make reservations 2 to 5 days in advance, depending on the individual airline's rules. Be sure to ask what documents you will need to supply. Airline documentation requirements are similar to those of cruise lines, and some airlines also have special forms that must be filled out by your doctor. You might have to sign a liability statement. In a few cases, you are required to bring a companion with you on the flight. Additional charges vary, but expect to pay about $50 extra.

Allow at least 1 hour between connecting flights. Remember that you must arrange for oxygen for the time between flights. Local oxygen suppliers will provide this service for layovers between flights. Whenever possible, use small airports because they usually have fewer delays and their boarding gates are closer together.

Lodging

Hotels and motels are usually very accommodating about special needs. Someone is usually available to transport your oxygen tank. Contact your local supply company about arranging for a supply company at your destination to set up the equipment in the room before you arrive.

Relaxation and Breathing Techniques

The feeling of not being able to get enough air into your lungs is frightening. Breathing training is aimed at controlling the respiratory rate and breathing pattern, thus decreasing the risk that used air will not stay in your lungs. Breathing training also attempts to improve the position and function of the respiratory muscles and effectiveness of coughs.

You can do exercises to help you breathe more easily. Practice the exercises daily so that when you are having problems with shortness of breath, you will do them naturally and not panic.

• Pursed-Lip Breathing: Pursed-lip breathing will slow down your breathing so that it is more efficient (breathing fast only worsens shortness of breath). Pursed-lip breathing can be done anywhere.
  1. Breathe in slowly through your nose. Hold your breath for 3 seconds.
  2. Purse your lips as if you are going to whistle.
  3. Breathe out slowly through your pursed lips for 6 seconds.
• Abdominal/Diaphragm Breathing: Abdominal breathing also slows down your breathing and helps relax your entire body.
  1. Lie on your back in a comfortable position with a pillow under your head and knees.
  2. Rest one hand on your abdomen just below your rib cage. Rest the other hand your chest.
  3. Slowly breathe in and out through your nose using your abdominal muscles. The hand resting on your abdomen will rise when you breathe in and fall when you breathe out. The hand on your chest should be almost still. Repeat three or four times before resting.
• Active Cycle of Breathing Technique (ACBT): ACBT should be discussed with your doctor before implementation. ACBT is a series of breathing techniques that help clear secretions and improve aeration (the delivery of air to the alveoli [air sacs]). ACBT can be done sitting upright. This technique combines breathing exercises with the huff cough and has three components in a set cycle. The cycle is repeated until the huff becomes dry or nonproductive, or when 20 minutes have passed. Ask your doctor for instructions on this therapy

Pulmonary Rehabilitation

Patients with advanced lung disease may have emotional disorders, mainly depression and anxiety. In addition to appropriate medical therapy for theses disorders, exercise such as a pulmonary rehabilitation program can help lessen these feelings.

Talk to your doctor about participating in a pulmonary rehabilitation program. Pulmonary rehabilitation uses different therapeutic components for persons with pulmonary disease. The goal of pulmonary rehabilitation is achieving and maintaining the patient's maximum level of independence and functional ability in the community.

Pulmonary rehabilitation is becoming a crucial component of the overall therapy of many patients. It offers the best treatment option for patients with chronic respiratory illnesses. Pulmonary rehabilitation has helped people achieve increased exercise capacity and endurance; improved health-related quality of life; decreased shortness of breath; and fewer hospital admissions, even among patients with the most severe degree of lung disease.

The goals of a pulmonary rehabilitation program are to

• Reduce work of breathing
• Improve pulmonary function
• Alleviate shortness of breath
• Increase efficiency of energy use
• Correct nutrition deficiencies
• Improve exercise performance and daily activities
• Restore a positive outlook
• Improve emotional state
• Decrease health-related costs
• Improve survival.

If you are interested in pulmonary rehabilitation, ask your doctor to help you design a program that will work for you.

References

Agency for Toxic Substances and Disease Registry. (2000); Asbestos and your health [fact sheet]. Atlanta: US Department of Health and Human Services.

American Lung Association. 2000. Asbestosis. New York: American Lung Association. Available from URL: www.cheshire-med.com/programs/pulrehab/asbestosis.html

Bartholomew D, Gainey A, Louie W, Phillips C, Sonnek N. 1999. Asbestosis. Omaha (NE): Creighton University School of Medicine. Available from URL: www.medicine.creighton.edu/forpatients/Asbestosis/Asbestosis.html

Children's Hospital of Eastern Ontario. 1999. Assisted airway clearance for Immotile Cilia syndrome. Ottawa, Ontario, Canada: Children's Hospital of Eastern Ontario. Available from URL: www.cheo.on.ca./pcdc/pcdc_physio.htm.

Cohen BJ, Wood DL, Memmler RL. 2000. Memmler's the human body in health and disease. Philadelphia: Lippincott, Williams & Wilkins.

Cohen BJ, Wood DL. 2000. Memmler's the structure and function of the human body. Philadelphia: Lippincott, Williams & Wilkins.

Galvin JR, D'Alessandro MP. 1994. Electric Diffuse Lung: the diagnosis of diffuse lung disease. Asbestosis. Iowa City (IA): University of Iowa College of Medicine Virtual Hospital. Available from URL: www.vh.org/Providers/Textbooks/DiffuseLung/Text/Asbestosis.html.

Lewis SR, Heitkemper MM, Dirksen SM. 2000. Medical/surgical nursing: assessment and management of clinical problems. 5th edition. St. Louis (MO): Mosby-Year Book.

Harrison A, editor. 1995. Mosby's patient teaching guide. St. Louis (MO): Mosby-Year Book. National Cancer Institute. 1996. Questions and answers about asbestos exposure: CancerNet from the National Cancer Institute. Bethesda (MD): National Cancer Institute. Available from URL: www.graylab.ac.uk/cancernet/600321.html.

Springhouse Corporation. 1998. Anatomy and physiology: a health care professional guide. Springhouse (PA): Springhouse Corporation.

Springhouse Corporation. 1998. Diseases: a health care professional guide. Springhouse (PA): Springhouse Corporation.

This guide provides the patient living with asbestos-related illnesses and his or her family with skills and information to help them adapt and cope with their illness. Use of trade names and commercial sources is for identification and does not imply endorsement by the Agency for Toxic Substances and Disease Registry or the U.S. Department of Health and Human Services.

For more information, contact ATSDR's toll-free information line:

(888) 42-ATSDR. . . that's (888) 422-8737

ATSDR's Internet address is www.atsdr.cdc.gov

This page last updated on June 14, 2005

E-mail contact: ATSDR National Exposure Registry

ATSDR Home  |  Search  |  Index  |  Glossary  |  Contact Us
About ATSDR  |  News Archive  |  ToxFAQs  |  HazDat  |  Public Health Assessments
Privacy Policy  |  External Links Disclaimer  |  Accessibility
U.S. Department of Health and Human Services