YOUR GUIDE TO LIVING WITH
A BOOK ABOUT:
CHRONIC LUNG DISEASE
THIS BOOK IS FOR YOU This book has been given to you because you have lung disease. You may have heard your doctor refer to your condition as chronic obstructive pulmonary disease (COPD) or simply chronic lung disease. This term is used to describe a number of conditions that block air from flowing easily within the lungs. Having chronic lung disease makes breathing more difficult. Chronic lung disease cannot be cured, but you can treat it, take charge of it and manage it. Your healthcare provider will design a treatment plan that will include medication, exercise and techniques that will help you deal with your symptoms. You will learn how you can improve your health and the quality of your life. Itâ€™s important to keep in close contact with your healthcare providers. Talk to them whenever you have questions about your care. When you have finished reading this book, share it with your family so that they, too, can understand how chronic lung disease is managed.
ÂŠ2019, 2020 HERC Publishing Living with Lung Disease is designed to enhance the treatment prescribed by your healthcare provider, not replace it. If the recommendations outlined in this book do not agree with the instructions provided by your healthcare provider, follow the treatment that has been prescribed for you. Talk to your healthcare provider before making changes in your treatment.
CHRONIC LUNG DISEASE Chronic lung disease is a condition that prevents you from breathing normally. The term chronic lung disease includes several different diseases that block the flow of air leaving the lungs as you breath out (exhale). Chronic means the disease never goes away. It is always present even when there are few, if any, symptoms. • chronic bronchitis • emphysema • asthma • COPD –– a combination of two or more of these diseases • restrictive lung disease
It is possible to have two or more of these diseases at the same time.
Normally, the respiratory system moves enough air in and out of the lungs to meet the body’s needs. In each of these diseases the flow of air is blocked (obstructed), causing stale air to become trapped in the lungs. The trapped air leaves less room for fresh air to enter the lungs and makes it harder for the lungs to get oxygen to the rest of the body. Common symptoms of lung disease include: • shortness of breath while doing everyday activities • chronic coughing • wheezing • having too much mucus in the lungs • having a cold that lasts for weeks • frequent respiratory infections • weakness or a very tired feeling For some people, the symptoms are mild and do not cause serious breathing problems. For others, the symptoms can be serious enough to interfere with daily activities. 3
NORMAL BREATHING When we breathe, oxygen travels down the windpipe and into the lungs through a series of bronchial tubes called airways. Airways inside the lungs
Each airway is made of stretchy tissue and wrapped with bands of muscle. These tubes branch out and get smaller and smaller. At the end of the airways are tiny balloonshaped air sacs. When the air we breathe reaches the tiny air sacs, blood vessels on the air sac walls pick up the oxygen and carry it through the bloodstream to the bodyâ€™s cells. After the cells get the blood and oxygen they need, a waste product called carbon dioxide passes from the bloodstream to the air sacs Air and then is breathed out. sacs While the airways let air in, they also have to keep out dirt, dust, pollen, molds, bacteria and other substances. The lining of the throat and airways is coated with a sticky fluid called mucus. Mucus traps dirt, dust, pollen and other substances in the upper airways.
Bronchial tube (airway)
Cilia (hair-like structures)
Small hair-like structures called cilia line the bronchial tubes. They gently sweep these substances up and out toward the throat where they can be swallowed or coughed out.
CHRONIC BRONCHITIS In chronic bronchitis, the airway lining becomes swollen and inflamed. Inflammation causes the airways to produce too much mucus. Extra mucus causes coughing and wheezing. When the airways swell, less air flows in and out of the lungs. Swelling and inflammation cause the lungs to become infected more easily. Chronic bronchitis may be caused by cigarette smoke, pollution, lung infections and allergens (things that cause allergic reactions). EMPHYSEMA In emphysema, the air sacs lose their elastic quality. They are no longer able to stretch and shrink with breathing. When the lungs are less elastic, stale air is trapped in the air sacs. In time, the trapped air causes the air sacs to break down. The breakdown of the air sacs causes shortness of breath. Pushing trapped air out of the lungs causes coughing and makes it hard to get rid of excess mucus. The main cause of emphysema is smoking; however, emphysema can occur in people who have never smoked. Environmental pollutants also may cause emphysema.
Swelling, inflammation & excess mucus
Air sacs lose their elastic quality & trap stale air
Airways break down & make it difficult to exhale
Sometimes the cause of emphysema is genetic. In a small percentage of people, emphysema occurs because of low levels of a protein called alpha-1 antitrypsin or AAt. This protein protects the elastic tissues in the lungs from the destructive effects of certain enzymes. A lack of AAt can lead to lung damage. In time, the lung damage can lead to emphysema. AAt deficiency is a hereditary condition. Emphysema caused by an AAt deficiency can occur in people who have never smoked; however, this condition can progress faster and become more severe if you smoke. 5
ASTHMA In asthma, the airways become overly sensitive when exposed to certain allergens and irritants. The muscles surrounding the airways tighten and the airways swell and produce excess mucus. Swelling, tightening and excess mucus keep air from moving in and out of the lungs as easily as it should. Dust, mold, pollen, tobacco smoke and cold weather can trigger symptoms. The cause is not always known; however, experts believe that heredity plays a role in the development of asthma.
Swollen, inflamed airway Normal airway
RESTRICTIVE DISEASES Restrictive diseases prevent the lungs from expanding fully. Two examples of restrictive diseases are pulmonary fibrosis and sarcoidosis. Pulmonary fibrosis affects the narrow space between the air sacs and the tissue surrounding the air sacs. A fibrous substance gathers in this space and scar tissue replaces healthy tissue. Instead of being flexible, the lungs become stiff. It takes more energy to expand them during breathing. In time, the lungs become smaller and less air is able to move in and out of the lungs. Pulmonary fibrosis may be caused by viral, bacterial or fungal infections, pollution, untreated pneumonia or tuberculosis. It also can occur in people who work around asbestos or ground stone or metal dust. Sometimes the cause is not known. Sarcoidosis involves the immune system. In this disease, a type of white blood cell that protects the body from disease overreacts and causes inflammatory cells to build up in the body. In the lungs, this buildup of inflammatory cells damages the airways and air sacs. Normally elastic tissue becomes stiff, making it hard to get oxygen into the bloodstream. While the cause is not known, some experts believe sarcoidosis is caused by inhaling infectious or allergic substances. 6
YOUR TREATMENT Your treatment may involve working with a team of healthcare professionals, such as a: • nurse • pulmonary rehab specialist • respiratory therapist • occupational therapist
• physical therapist • registered dietitian • pharmacist
When it comes to managing lung disease, you must be willing to be a part of your team. Working together with the members of your healthcare team will help you stay healthy and active. Talk to your healthcare team about any concerns you have. Your treatment is likely to involve: • taking medication • doing breathing exercises • learning to clear your lungs • doing physical exercises • learning to relax • avoiding things that cause breathing problems • quitting smoking (if you are a smoker) • treating anxiety and/or depression • treating sleeping disorders • learning to conserve energy Pay attention to your body. If you think there may be a problem, don’t wait to get help. You may be able to prevent a more serious problem or an admission to the hospital if you get immediate care. Pulmonary rehab Pulmonary rehab is a program designed for people who have lung disease. Specially trained healthcare professionals will teach you how to exercise, cope with shortness of breath and stay active. You will learn easier ways to perform daily living tasks so that you can save energy to do the things you enjoy. You also may learn some relaxation techniques which will help you cope with shortness of breath, stress and anxiety. Call your local hospital to find out about programs in your area. 7
MEDICATIONS OTHER MEDICATIONS YOU MAY NEED TO TAKE • Antibiotics are used to treat bacterial infections. To get rid of an infection, you must take the prescribed amount for as long as your doctor tells you to. • Antihistamines block allergic reactions that cause breathing problems. They cause dry eyes, nose and mouth. Since they can thicken mucus, talk to your doctor before you take them. • Decongestants reduce swelling in the nasal passages and are used to treat allergies. Decongestants are in cold, cough and allergy medications. These medications can affect blood pressure, so check with your doctor before you take them. • Diuretics increase the rate at which your body eliminates sodium and water. Lowering the amount of fluid in the body reduces the work of the lungs. Some diuretics cause the body to lose potassium, which can result in dizziness, fatigue and muscle cramps. If your diuretic causes potassium loss, your potassium will be checked. If it’s low, you may need to eat highpotassium foods or take a potassium supplement.
You may hear your healthcare provider talk about two basic types of medications: maintenance medications and quick-relief medications. Maintenance medications are used routinely (usually daily) to help keep your airways open and control your symptoms. They help clear mucus and relieve inflammation and swelling. Quick-relief medications are used when you need to relieve your symptoms quickly because your airways have narrowed and you are having trouble breathing. Your healthcare provider or pulmonary specialists will explain how your medications work and when and how to use them. Carry a list of your medications, doses and information on how to take the medications. Include medications you can buy without a prescription. Show the list to all of your healthcare providers. Medication guidelines • Know the names of your medications and what they are supposed to do. Know the generic and the brand names and dosages of your medications. • Know what side effects to expect from your medications. Contact your healthcare provider if you have any unexpected side effects. • Take your medications exactly as they have been prescribed. Do not stop taking or change your medication or change the dose without first talking to your healthcare provider. • Refill your prescriptions before you run out of medication. Try to fill all your prescriptions at the same pharmacy so the pharmacist can check for interactions and answer questions.
Inhaled corticosteroids Inhaled corticosteroids reduce inflammation in the airways These medications are inhaled and go directly into the airways. To work well they must be taken routinely. Since very little is absorbed by the body, they do not produce the same side effects as oral steroids do. Possible side effects include: • dryness or soreness in the mouth and throat • hoarseness and/or cough Side effects of inhaled corticosteroids can be lessened by using a metered-dose inhaler with a spacer and rinsing your mouth after inhaling the medication. Inhaled corticosteroids are not the same as anabolic steroids. They do not have the same side effects. Examples of inhaled corticosteroids: Each of these medications can be inhaled either with a dry-powder inhaler or a spray inhaler. Read the directions that come with your prescription to understand how to take your medication. Brand name
Asmanex® Alvesco® Flovent® Pulmicort® Qvar®
Mometasone Ciclesonide Fluticasone Budesonide Beclomethasone
Examples of combination inhaled corticosteroids: Each of these medications can be inhaled either with a drypowder inhaler or a spray inhaler. Read the directions that come with your prescription to understand how to take your medication. Brand name
Advair® Dulera® Symbicort®
Fluticasone & Salmeterol Mometasone & Formoterol Budesonide & Formoterol
Bronchodilators Bronchodilators relieve symptoms by relaxing the muscle bands that tighten around the airways. This opens the airways, letting more air come in and out of the lungs. As a result, breathing improves. Bronchodilators also help clear mucus from your lungs. There are two forms of bronchodilators: • short-acting bronchodilators (relieve symptoms quickly to stop shortness of breath) • long-acting bronchodilators (help control symptoms by keeping the airways open for several hours) Short-acting bronchodilators Short-acting bronchodilators work by quickly relaxing the smooth muscles in the airways causing them to open. These bronchodilators take effect within about five minutes of inhaling the medication. They can be used to stop a symptom flare-up once it has begun. They are quick-relief medications. Possible side effects include: • dizziness • shakiness or nervousness Examples of inhaled short-acting bronchodilators: Each of these medications can be inhaled either with a spray inhaler or a nebulizer (see page 16 for information on nebulizers). Read the directions that come with your prescription to understand how to take your medication. Brand name
ProAir®, Proventil®, Ventolin®
Examples of inhaled combination short-acting bronchodilators:
Ipratropium Bromide & Albuterol
Ipratropium Bromide & Albuterol
Anticholinergics Anticholinergics block the production of mucus and open up the airways by relaxing the muscles that tighten around the airways. While some of them take longer to work than short-acting bronchodilators, they may provide added relief when combined with short-acting bronchodilators. Possible side effects include: • dry mouth • headache • blurred vision
• urinary retention • constipation
Examples of anticholinergics: Each of these medications can be inhaled either with a dry-powder inhaler or a spray inhaler. Read the directions that come with your prescription to understand how to take the medication. Brand name
Long-acting bronchodilators Long-acting bronchodilators open the airways by relaxing the muscles around the airways. Most of these medications do not act quickly enough to be used for quick relief. They are maintenance medications. Longacting bronchodilators do not wear off as fast as the medications that provide quick relief from symptoms. They can help keep airways open for about 12 hours. These medications are sometimes used along with other medications. Possible side effects include: • headache • muscle cramps or spasms • dizziness • twitchy muscles • nervousness • difficulty sleeping • nausea • rapid or irregular heartbeat
Examples of inhaled long-acting bronchodilators: Each of these medications can be inhaled either with a dry-powder inhaler or a spray inhaler. Read the directions that come with your prescription to understand how to take the medication. Brand name
Examples of inhaled combination long-acting bronchodilators: Brand name
Salmeterol & Fluticasone
Formoterol & Mometasone
Formoterol & Budesonide
Other long-acting medications There are a few other long-acting medications that also can help block inflammation that causes breathing problems. The long-acting medications listed below may be used alone or with other medications, such as corticosteroids. They also may be used as an add on treatment for people with severe lung disease. Examples of other long-acting medications: Each of these medications are tablets that can be taken by mouth (orally). Read the directions that come with your prescription to understand how to take your medication.
Oral corticosteroids Oral corticosteroids are taken by mouth (orally). They help open up the airways by reducing inflammation and swelling. They are sometimes used along with other medications. Oral steroids can cause an upset stomach. If you have stomach pain or burning, tell your healthcare provider. Do not drink alcohol if you are taking an oral steroid. Take only the prescribed amount. Never stop taking oral steroids without your doctor’s approval. Make sure you tell your healthcare provider if you have diabetes. These medications can increase blood glucose levels. Possible side effects include: • weight gain • nervousness • insomnia • nausea • increased appetite
• easy bruising • frequent urination • stomach pain or burning • weakness or fatigue • sweating, swelling, water retention
More serious side effects can occur from the use of oral steroids. These side effects only occur after high doses and many years of use. Side effects from short-term use will go away when the medication is stopped. Tell your healthcare provider that you are taking an oral steroid before you take new medication, have any vaccinations or have any type of surgery. Examples of oral corticosteroids: Each of these medications are taken by mouth (orally) either as a tablet or a liquid. Read the directions that come with your prescription to understand how to take your medication. Brand name
Cortef® Deltasone®, Prednisone Intensol®, Rayos® Millipred®, Orapred ODT® Pediapred®, Veripred® Medrol®
Hydrocortisone Prednisone Prednisolone Methylprednisolone
Only a few medications are listed in this book. It is not possible to list all the medications on the market. Medications also change frequently. If your medication is not included, talk to your healthcare provider or your pharmacist about your medication, possible side-effects or medication interactions.
INHALED MEDICATION Certain medications can be inhaled by using a special inhaler device. Inhaled medication goes directly into the lungs. The two main types of inhaler devices are spray metered-dose inhalers and dry-powder metered-dose inhalers. METERED-DOSE INHALERS A metered-dose inhaler (MDI) uses a pressurized canister to deliver a spray of medication. Your healthcare provider may want you to use a device called a spacer, which can be attached to the metereddose inhaler. When you use a spacer, the medication can be inhaled more slowly so that it makes its way deep into the lungs. Spacers also help reduce the side effects that may result from inhaled medications. Guidelines for using a spray metered-dose inhaler with a spacer: 1. Remove the caps from the inhaler and mouthpiece of the spacer. Insert the inhaler mouthpiece into the end of the spacer. 2. Hold the inhaler so that the metal canister is on top and the mouthpiece at the end of the spacer is pointed toward your mouth. 3. Breathe out through your nose. The end of the spacer should be in your mouth over your tongue. Close your lips around the mouthpiece. 4. Press down on the canister while you breathe in through your mouth. Inhale slowly and deeply. 5. After breathing in, hold your breath for as long as possible; then exhale slowly through pursed lips. If more than one puff of medication has been prescribed, repeat these steps. Wait one to three minutes between puffs. Keep the cap on the inhaler when it is not being used. If you have not used your inhaler for a few days, follow the product instructions for to make sure the inhaler is working. 14
Replacing and cleaning a metered-dose inhaler When you get a new canister of medication, check the canister to see how many puffs it contains. Divide the total number of puffs by the number of puffs you will use in a day. The number you get will tell you how many days the medication should last. Mark your calendar for the date the medication will need to be refilled. Rinse the spray inhaler and spacer daily. Wash it each week with mild soap and water to keep it clean and free of medication buildup. DRY-POWDER INHALERS Dry-powder inhalers (DPIs) use tiny grains of dry powder instead of a spray. Most dry-powder inhalers have a dose indicator that counts down the number or doses as you use them. Unlike a spray inhaler, when you use a DPI, you need to inhale quickly and forcefully. Guidelines for using a dry-powder inhaler: 1. Hold the inhaler in a flat and level position. A dry-powder inhaler does not need to be shaken. A dry-powder inhaler does not need to be shaken before you use it. Shaking some DPIs can cause them to lose powder. 2. Slide the lever on the inhaler from the left to the right until you hear it click. This action loads the dose of medication. 3. Breathe out slowly and completely while holding the inhaler away from your mouth. Place the mouthpiece in your mouth and tighten your lips around it. Now breathe in deeply and quickly through the inhaler â€“â€“ not through your nose. 4. Take the mouthpiece out of your mouth and hold your breath for about 10 seconds. With the inhaler mouthpiece away from your mouth, breathe out slowly. Follow the instructions that come with your inhaler regarding when to dispose of the inhaler after removing it from the packaging. 15
More about dry-powder inhalers There are many different types of dry-powder inhalers. Read the instructions that come with your inhaler. Generally, you need to inhale with enough force to get the medication to the smallest airways within your lungs. In order for the inhaler to work the way it should, your mouth must close tightly around the inhalerâ€™s mouthpiece. You must then inhale steadily, deeply and forcefully. You also must inhale quickly. If you are taking an inhaled corticosteroid medication, be sure to rinse your mouth after using your inhaler. Keep the dry-powder inhaler dry to prevent caking or clumping of the medication. Do not breathe out into the inhaler. Remove the inhaler from your mouth before breathing out. Put the cap back on the inhaler or click the inhaler shut after you use it. Store the dry-powder inhaler in a dry place at room temperature. The bathroom cabinet is not a good place to store your medications. Bathrooms are usually damp. Your medication may be damaged if you keep it in an area where it is exposed to dampness. If you are leaving your home for any length of time, keep your inhaler with you. Do not leave your inhaler in your car where it may get too hot or too cold. USING A NEBULIZER A nebulizer uses an air compressor to mix liquid medication with air to form a mist. The mist is inhaled through a mask or a mouthpiece. This device is helpful for people who have trouble using an inhaler. When using a nebulizer, breathe slowly and take occasional deep breaths before you inhale your next breath. If you breathe normally during the treatment, the medication will not get into your airways the way it should. If you have trouble using the mouthpiece, face masks are available and may be easier for you to use. Follow the instructions that come with the device. Make sure you understand how to use the nebulizer properly. If you have questions about your nebulizer medications or equipment, talk to your nurse, respiratory therapist or medical equipment company. 16
OXYGEN Your doctor may want you to use oxygen all of the time or only at certain times. You will be told how much oxygen to use and the length of time to use it. If you are feeling anxious about using oxygen, it may help to remember that oxygen is a medication. These guidelines will help make it safe and effective. • Do not smoke or let anyone smoke in your home or around you when you are using oxygen. • Keep your oxygen away from heat and sunlight. Keep your oxygen at least 10 feet away from open flames and flammable substances such as oil, grease or petroleum-based products. Oxygen will not explode, but it does cause things to burn faster. • Do not use aerosol spray products around your oxygen. Examples of aerosol sprays are hair spray, spray deodorants, spray air fresheners and spray cologne. Aerosol sprays are flammable. • Do not use potent lotions or rubs when you use your oxygen. These types of products are flammable. • Make sure your oxygen tubes are not kinked or damaged. Do not sit or lie on these tubes. • Check your oxygen supply often. Find out how you can get more oxygen when you need it. • If you are using a portable unit, find out how long the oxygen supply will last. Time outings so that you do not run short. • If you have been out with a portable liquid unit and have come home with no plans to go out soon, transfer your long tubing to the portable unit to use up the remaining oxygen. • Do not place your liquid oxygen tank on its side as the liquid can dry up. • When using oxygen, inhale through your nose. Inhaling through your mouth is drying and may waste some of the oxygen. Oxygen is usually delivered through a small tube called a nasal cannula. The cannula delivers your oxygen through two small tubes that fit in each nostril. Change your cannula often, especially if it is soiled.
OXYGEN SYSTEMS More than one type of oxygen may be prescribed. Be sure you understand how to use your oxygen system. If you have questions about your system, contact your oxygen supply company. A compressed oxygen system stores oxygen gas under pressure in a tank. A gauge tells you how much oxygen is left in the tank. A flow meter on the tank regulates the flow rate.
A liquid oxygen system stores oxygen in a thermal container that keeps it cooled to a liquid form (oxygen gas becomes a liquid when it is cooled). When the system is used, the liquid is warmed until it becomes a gas. A portable liquid oxygen unit is easy to carry.
An oxygen concentrator removes nitrogen and other gases from the air, leaving only oxygen. It runs on electricity. A meter regulates the flow rate. The concentrator must be kept in an area that has a good air supply. Oxygen and travel If you travel by car, leave a window cracked. Place your oxygen in an upright position on the floor. Store extra oxygen behind the seat –– not in the trunk. If you travel by bus or train, tell the carrier that you are on oxygen. Ask if you can board with your equipment. You may need a doctor’s letter or a copy of your prescription when you board. If you travel by plane or ship, check the airlines or the cruise line before your trip. Some airlines will provide oxygen for you. Check with the cruise line before your trip to see if you can board with your oxygen. You may need to arrange for oxygen to be delivered to the ship. Whether you travel by plane or ship, it is a good idea to have a doctor’s letter and a copy of your prescription with you. 18
BREATHING MUSCLES The lungs are not made up of muscle, so the muscles that surround them must do the work of pumping air in and out. The diaphragm, a muscle located below the lungs, is the largest breathing muscle and does most of the work. As you inhale, the diaphragm contracts and moves down and out, allowing the lungs to fill with air. As the diaphragm relaxes, it moves up and air is pushed out of the lungs. Inhale
Exhale Breathing muscles
Diaphragm Breathing muscles
Other muscles around the lungs also help with breathing. They are located in the abdomen, neck, shoulders and in the spaces between the ribs. When the diaphragm is weak or is not being used properly, these muscles help pump air in and out of the lungs. If the muscles around the lungs are weak, breathing will be more difficult. Practice these breathing exercises to strengthen your muscles. PURSED-LIP BREATHING Pursed-lip breathing is an exercise that releases trapped air from the lungs and lets fresh air come in. How to do pursed-lip breathing 1. Inhale through your nose or mouth. Purse your lips as if you are going to whistle. 2. Exhale through your mouth with your lips pursed. Do not force air out. Instead, gently and slowly push the air out. 3. Take at least 3 times as long for exhaling as for inhaling. 19
DIAPHRAGMIC BREATHING People who have lung disease often have enlarged lungs. The lungs enlarge because air gets trapped in them. The diaphragm may flatten due to lung disease. If this happens, smaller muscles in the upper chest try to help out. Diaphragmatic breathing will strengthen your diaphragm and abdominal muscles and help you breathe better. How to do diaphragmatic breathing: 1. Sit in a chair with your back and shoulders straight or lie on your back with your head and knees supported by pillows. 2. Place one hand on your upper chest so you can feel the movement of your chest and the muscles around your chest. 3. Place your other hand on the center of your stomach so that you can feel the movement of your diaphragm. 4. Inhale slowly through your nose and mouth. Let your stomach muscles relax and move outward. 5. Tighten and pull your stomach muscles in as you exhale slowly through pursed lips. The hand that is on your abdomen should feel the most movement. Do this breathing exercise for 10 minutes every day. Rest as needed between breaths. As you become comfortable with this exercise, you will notice that you use it all the time. When you first learn diaphragmatic breathing, it may be easier for you to follow the instructions when you are lying down. With more practice, you can try diaphragmatic breathing while sitting in a chair. Breathe out
Breathe in Push out with stomach muscles
Pull in with stomach muscles
CLEARING YOUR LUNGS Having too much mucus makes breathing difficult and increases your chance of getting a lung infection. You can’t stop your body from producing mucus, but you can do some things to get rid of it. Limit caffeine. Regular tea, coffee and soda pop are just a few of the items that contain caffeine. Caffeine can cause you to lose fluids. Losing fluids makes mucus thicker. Do not take antihistamines or diuretics (water pills) unless your doctor tells you to do so. These medications thicken mucus and make it harder to bring up. Drink plenty of liquids to thin your mucus. The amount of liquid you need depends on whether you have other medical problems. Water works the best to thin mucus. You will need to drink plenty of liquid for at least two to four days before you notice that your mucus is thinner. Once it has become thin, controlled coughing will force mucus up and out of your lungs. How to do controlled coughing: 1. Sit in a chair. Fold your arms across your stomach. Bend forward slightly. Inhale slowly through your nose. Take in as much air as you can. Hold your breath for two seconds. 2. Instead of exhaling, cough twice with your mouth slightly open. The first cough loosens mucus. The second cough moves it upward so it is easy to cough out. Try not to inhale between the first and second cough. 3. Wait a couple of seconds. Inhale through your nose by sniffing gently. Breathing in deeply after you cough may force mucus back into your lungs. The best times to clear mucus are: • when you get up in the morning • before your evening meal • one hour before bedtime 21
PHYSICAL ACTIVITY Often people make the mistake of believing that if they avoid physical activity they will avoid becoming short of breath. This is not true. Staying physically active will improve your breathing and help you feel better. Inactivity leads to weak muscles. If your muscles are weak, you are likely to have increased shortness of breath. Check with your healthcare provider before you start an exercise program. Your healthcare provider or pulmonary specialists can help you get started with the type of exercise that is right for you based on your physical condition. Before you begin any type of exercise, find out: • how much exercise you should do each day • how often to exercise each week • what type of exercise you should do • if you should take your medication at a certain time (such as before, after or during your exercise activity) Types of exercise A well-rounded exercise program often includes three types of exercises: 1. Stretching. Stretching can improve your range of motion and flexibility. Stretching your arms and legs before and after exercise helps get your body ready for the activity and helps prevent injuries and to muscles and joints. 2. Aerobic exercise. Aerobic exercise involves continuous physical activity that uses large muscle groups for a period of time (usually 20 minutes or more). Walking, bicycling (indoor biking on a stationary bike and outdoor biking) and water aerobics are examples of aerobic exercises. These exercises strengthen your heart and lungs and improve your body’s ability to use oxygen. Regular aerobic exercise can help decrease your heart rate and blood pressure and improve your breathing. 3. Strengthening exercises. Strengthening exercises strengthen muscles and improve bone health. Lifting weights or working out with resistance bands are examples of strengthening exercises. Strengthening your muscles will help you with daily living activities, such as lifting objects, doing housework, preparing meals, climbing stairs and more. 22
Plan ahead It is a good idea to plan ahead for any activity you do. Always plan your exercise activity for a time of day when you have the most energy. • Wear loose, comfortable clothing and athletic shoes that support your feet. • Ask your healthcare provider if you should use a quick-relief inhaler before your exercise activity. • If your healthcare provider has prescribed oxygen and wants you to use it during your exercise activity, find out what the flow rate should be –– do not increase the oxygen flow rate on your own. • Warm up before your activity and cool down after your activity with slow walking or stretching exercises. It may help to work with an exercise specialist in a work-out facility. Getting involved in a pulmonary rehab program also will help you start slowly and work out in a way that will not cause injuries. Walking Walking is one of the best ways to strengthen your muscles. At first you may only be able to walk a few steps. If you start walking and begin to have breathing problems, stop. Sit down. Relax. Do pursed-lip breathing. Wait until you can breathe better. Then start walking again. If shortness of breath continues or gets worse after rest, or if your endurance has declined over a period of time, call your healthcare provider. Weakness and increased shortness of breath may be a sign of a respiratory infection. You should walk every day (with your doctor’s approval). Try to go farther each day than you did the one before. First walk in your house. Then, depending on the weather, try walking outdoors or go to an indoor workout facility. Example of a walking program: weeks 1 and 2
walk 5 to 10 minutes
3 times a day
weeks 3 and 4
walk 10 to 15 minutes
2 times a day
weeks 5 and 6
walk 15 to 20 minutes
2 times a day
weeks 7 and 8
walk 20 to 25 minutes
2 times a day
weeks 9 and 10 walk 25 to 30 minutes
1 time a day
More about physical activity Exercise should become a regular part of your daily routine. Regular exercise will make it easier for you to do your normal daily activities. Once you get stronger, you will be able to do more of the things you like to do. Exercise precautions: • Set a reasonable goal. At first, set a goal you know you can reach without too much trouble. Ask your healthcare provider to help you set a goal. • Avoid outdoor activities when it is very cold, very windy, very hot and humid or when the pollen counts are high. • Stay away from areas where the air is polluted, such as heavy traffic areas. • Prepare for exercise by following your treatment plan. Several medications when taken before exercise can prevent symptoms. • Wait one to two hours after eating to do any type of exercise. • Do not exercise if you are not feeling well, or if you are suffering from an infection or have a flare-up of your symptoms. If you have any of these symptoms while you are exercising, stop what you are doing. Rest for a few minutes: • increased shortness of breath that does not return to normal after a few minutes • chest discomfort, such as tightness, heaviness or pressure • dizziness • rapid heartbeats or skipped heartbeats These symptoms may mean that you are working too hard. When the symptoms lessen, begin again. If the symptoms continue or get worse, call your healthcare provider. 24
NUTRITION A balanced diet will give you more energy, help you stay at a healthy weight and help your body fight infection. • Eat a variety of foods. Eat only small amounts of sweet foods and drinks. • Drink 6 to 8 glasses of liquid each day (unless your doctor has told you not to). • Eat 5 or 6 small meals a day. Eating too much at one time can cause breathing problems.
Sodium. High-sodium foods cause your body to hold fluids. You may be advised to cut back on sodium. Read product labels to see if the product is high in sodium. A common recommendation is no more than 2,000 mg. of sodium a day. If you have high blood pressure, you be told to limit your sodium to less than 1,500 mg. a day. Carbohydrates. Foods that are high in carbohydrates produce more carbon dioxide, a waste product that is removed from the body as you exhale. Having more carbon dioxide to get rid of makes your lungs work harder and causes more shortness of breath. Carbohydrates foods are: breads, potatoes, corn, pasta, rice, soda pop and sugary foods. Limiting carbohydrates may help you breathe better. Calcium. Getting enough calcium is important, especially if you are taking an oral steroid. Your doctor may want you to eat more calcium-rich foods. You also may be asked to take a calcium supplement. Examples of calcium-rich foods are low-fat milk and cheese and low fat yogurt. Potassium. Some diuretics cause the body to lose potassium, a mineral that regulates heart rhythm. If your diuretic causes potassium loss, your potassium level will be checked. If it is low, you need to take a potassium supplement or eat more high-potassium foods (such as bananas, strawberries, orange juice, dried fruits). Alcohol. Alcohol affects your respiratory system, is high in calories and contains no nutrients. It also can affect the way your medication works. Ask your healthcare provider if you can have alcohol. Caffeine. Caffeine causes your body to lose fluids, which leads to thicker mucus. Limit or avoid caffeinated drinks. Problem foods. Some foods produce gas and cause your stomach to swell. The swelling puts pressure on your diaphragm and causes shortness of breath. If you have trouble with gas or bloating, eat fewer of these foods or avoid them: asparagus, beans, broccoli, brussels sprouts, cabbage, carbonated drinks, cauliflower, corn, cucumbers, onions, peppers, radishes, and turnips. 25
Weighing yourself Check your weight once or twice a week. If you are taking a diuretic or a steroid, weigh yourself daily. If you have an unexplained weight gain or loss of 2 to 3 pounds in a day or 5 or more pounds in a week, contact your healthcare provider. He or she may be able to help you stabilize your weight. If you are overweight Extra body weight makes your heart and lungs work harder. Carrying too much weight on your body also limits the movement of your diaphragm, which causes shortness of breath. If your doctor suggests losing weight, ask your healthcare provider or dietitian to suggest a weight loss plan. If you are underweight People with lung disease can burn extra calories just from the work of breathing. Many people experience loss of appetite or feel full after only a few bites of food. If you have trouble gaining weight, clear your airways one hour before meals by doing controlled coughing or taking your medication. These tips may help you gain weight. • Add butter, margarine, oils or sauces to foods like cooked cereal, potatoes, rice, pasta, vegetables and breads. You also can add these when you cook meats, fish or eggs. • Saute or fry foods if possible. This method of cooking will add more calories than baking or broiling. • Add whipped toppings to hot drinks, such as hot chocolate and flavored decaffeinated coffee. Use whipped toppings on fruit, gelatin, pudding, custard, waffles and pancakes. • Use cream cheese and other spreads on breads and crackers. Add sour cream to soup, potatoes and casseroles. Use sour cream or cream cheese for dips, toppings on cakes, fruit and gelatin. • Add salad dressings and mayonnaise to sandwiches and crackers. Use dressings to marinate your meat. Nutrition supplements may help you gain weight. If you need to lower your fat intake because of high cholesterol or a medical problem, eat larger portions or take a dietary supplement. If you have trouble with loss of appetite, drink liquids after a meal instead of before or during a meal so that you do not feel full.
MANAGING TRIGGERS A trigger is a substance or activity that causes a flare-up of symptoms. Managing triggers will not prevent all symptoms, but it can help you feel better. Identify the things that cause your symptoms to get worse and work on reducing your triggers. Some of the most common triggers are listed here. Air pollution can trigger symptoms. Certain chemicals, which are found near factories and chemicals produced by vehicles can cause a flare-up of symptoms. Check the air quality reports in your area. Stay indoors on days with low air quality. Avoid toxic pollutants given off by building products such as glue, paint and paint thinners. Strong odors and fumes such as household cleaners, insecticides, hair spray, deodorant and air fresheners can trigger symptoms. To reduce odors and fumes, use scent-free grooming products. Do not use chlorine bleach or other laundry products with strong odors. Avoid air fresheners or other scented products. Use liquid types of cleaning products that do not have harsh odors. Cold temperatures can make breathing more difficult. When you are out in the cold, cover your mouth and nose with a scarf or mask. Stay indoors on very cold days. Humidity can trigger symptoms. Some people feel better when the weather is humid; others feel better in drier conditions. If a certain amount of humidity makes you feel better, use a humidifier to moisten the air. Be sure to clean it often. If you do better in a drier climate, install a dehumidifier to remove dampness. For many people, the best humidity level seems to be between 35 and 40 percent. Molds spores, from indoors or outdoors, can be inhaled into the lungs and trigger a flare-up of your symptoms. Outdoor mold spore levels peak in the late summer to early fall. People who are sensitive to mold should not do yard work. Indoor molds love warm, humid places, such as bathrooms, laundry rooms and basements. To control the mold in your home, remove items that cause mold to grow, such as acquariums, plants and dried flowers. Use exhaust fans in the bathrooms and when cooking. Clean ventilation equipment and replace filters often. Wash windows and shower stalls with non-chlorine bleach. Take out the trash and clean garbage containers often. 27
Dust mites Dust mites, tiny creatures that lives in house dust, can trigger a flare-up of your symptoms. Mites grow in warm, humid conditions. These tips will help you get rid of dust mites: • Keep the humidity in your home at 30 to 50 precent and the temperature at 68 degrees F. • Remove dust collectors, such as decorative pillows and clothcovered furniture, from your bedroom. Use window shades instead of curtains in your house. Clean them often. • Vacuum rugs and clean floors and mattresses often. Dust with a damp cloth or odorless, rub-on cleaners or have someone else do the cleaning. Use a vacuum cleaner with a HEPA filter. • Wash bedding once a week in hot water (hotter than 130 degrees F) to kill dust mites. Do not use feather pillows or downfilled comforters. Cover the mattresses and pillows with zippered, allergy-proof covers. Pollens can cause a flare-up of your symptoms. Pollen counts can be heard on the radio or television or read in the newspaper. Pollens are found outdoors; however, since most pollens are carried through the air, they can make their way indoors. To reduce your exposure to pollens, keep windows and doors closed. Use air conditioning and limit outdoor activities when the pollen count is high. After being outdoors, bathe, wash your hair and change your clothes. Use a clothes dryer rather than hanging clothes and bedding outside where the wet fabric can trap pollen. Avoid raking leaves, cutting grass or doing any type of yard work. Pet allergens (dander, saliva and urine) from pets can trigger breathing problems. If you think an animal is causing problems for you, it may be wise to remove the pet from your home. Allergens can stay trapped in carpeting and furniture for months, so you may have some symptoms even after the pet is gone, but eventually your symptoms will improve. If removing the pet from your home is not an option, keep the animal out of your bedroom, off the furniture and out of the car. Get a HEPA air filter for your bedroom. Vacuum and dust often. Wash your hands after touching your pet. Wash your hands after touching the pet and wash your pet often to cut down on allergens. 28
Smoke Any type of smoke (tobacco smoke, cooking or barbecue smoke, incense and fireplace smoke) can trigger symptoms. Smoke can affect anyone, but for a person with lung disease, exposure to smoke can cause serious breathing problems. These tips will help you steer clear of smoke and smoky areas: • Don’t smoke and don’t allow anyone else to smoke around you. Cigarette smoke is very irritating to already sensitive airways. Exposure to cigarette smoke has been linked to an increase in hospital visits and respiratory infections in people with lung disease. • Do not burn incense or candles in your home. • Avoid using a wood stove or a fireplace in your home. • Keep away from outdoor cooking areas. Have someone else do the outdoor cooking if you choose to grill or barbecue. • When you travel, stay in a no-smoking hotel room. If you are leasing a car, request a smokefree vehicle. Eat in the no-smoking area of restaurants or find a smoke-free restaurant. If you smoke, quitting is a healthy choice. If you smoke, having lung disease is the best reason in the world to quit smoking. What’s more, when you quit smoking, you reduce your risk of a heart attack, stroke and cancer. All forms of tobacco –– cigarettes, cigars, pipes and smokeless tobacco –– can damage your body. Smoking around friends and family members puts them at risk for health problems as well. If you have trouble quitting on your own, talk to your healthcare provider. A stop-smoking program or a medication may be recommended. Quitting is the best thing you can do for yourself and the people you care about. 29
DEALING WITH SLEEPING PROBLEMS Some people with chronic lung disease have trouble sleeping. There are many possible causes for not sleeping well. Anxiety, shortness of breath, stimulants, such as caffeine, and even certain medications can cause sleeping problems. These guidelines may help you sleep. • Go to bed and get up at about the same time each day. If you go to bed and cannot fall asleep in about half an hour, do not stay in bed. Get up and read or watch TV until you feel drowsy. Then go back to your bedroom to sleep. Do not nap during the day. • Avoid caffeine, nicotine and alcohol late in the day. Caffeine and nicotine are stimulants and can keep you from falling asleep. Alcohol can cause waking in the night and interfere with sleep quality. • Get regular exercise if possible. Do not exercise close to bedtime because it may stimulate you and make it hard to fall asleep. • Don’t eat a heavy meal late in the day. A light snack before bedtime may help you sleep. • Make sure your sleeping place is comfortable. Be sure that it is dark, quiet and not too warm or too cold. • Relax before going to bed by reading a book, listening to music, taking a bath or enjoying another activity you find relaxing. • If you lie awake worrying about things, make a to-do list before you go to bed. This may help you avoid focusing on those worries during the night. • Try doing pursed-lip and diaphragmatic breathing in bed to help you relax. If shortness of breath keeps you from sleeping, talk to your doctor. Using a bronchodilator before you go to bed may be recommended. Try sleeping on your side with a pillow between your legs and your head elevated with pillows, or lie on your back with your head elevated and your knees bent with a pillow under your knees. Certain medications can cause sleeping trouble. If you think a medication may be keeping you awake, talk to your healthcare provider. He or she may want to change the medication or the way you take it. Some people with chronic lung disease also may have a condition called sleep apnea. Sleep apnea can cause you to snore loudly or stop breathing for short periods of time. It is often treated with a special device called a CPAP or BiPAP. This device sends a constant flow of air through a mask which helps you breathe while you sleep. If you think you have sleep apnea, talk with your healthcare provider about treatment options.
STAYING IN TOUCH The most important and lasting pleasure you can have is doing the activities you enjoy with people you enjoy. Find ways to get out and become more active. Spending too much time alone or simply sitting around can lead to depression. Having lung disease should not prevent you from doing many of the things you like to do. • Stay in touch with friends. Friends are not a luxury –– they are a necessity. The support we get from the people who are close to us is invaluable when it comes to managing lung disease. Schedule time to do things with friends. Go to dinner. Go to the movies. Go to a play or a concert. Invite friends to your home to play cards or a board game. Accept and return invitations. Reach out to others. • Meet new people. One way to meet new people is to join a pulmonary rehab program. To find a program in your area, get in touch with your local hospital or call your local chapter of the American Lung Association. • Get involved in a hobby you enjoy. For example, you may want to join a book club if you like to read. Taking time for fun can make a big difference in your mental outlook. Maintaining intimacy You may believe that sex will make breathing problems worse or that sex is out of the question. But intimacy does not have to end just because you have lung disease. Talk openly with your partner about any concerns you have. Work together to bring about intimacy. Take some time to be close without sex. Holding hands and hugging are good ways to ease into sex. Choose a time when you are feeling rested and relaxed, such as shortly after a nap or in the morning after you have been up for a while. Wait two to three hours after eating a full meal to have sex. If you use oxygen, use it while you have sex. Follow the same liter flow you use with exercise. If you use a bronchodilator, use it 10 to 20 minutes before you have sex so that the medication has time to take effect. If you feel anxious, stop and rest. Hold hands or hug until you feel relaxed enough to begin again. 31
COPING WITH ANXIETY When you are anxious, breathing muscles and airways tighten. These changes cause increased shortness of breath. If you have ever had a serious breathing problem, it is normal to be afraid of having another one. At the first sign of breathing difficulty, you are likely to become anxious. Anxiety can turn into panic. The key to controlling panic is to stop the cycle right away. When you become anxious, stop what you are doing. Practice pursed-lip breathing. You can control anxiety by learning how to relax. One exercise involves relaxing tense muscles. When a muscle has been tense for a few seconds, it tends to relax. In this exercise, you tighten muscle groups and then let them go to help your body relax. 1. Sit in a comfortable chair or lie down with your head and legs supported by pillows. Close your eyes. Focus on your right hand. Make a fist. Tighten it as hard as you can. Keep it tense for five seconds. Then let go and open your fist. See how your hand relaxes. Keep your hand relaxed for 20 seconds. 2. After your right hand, tighten your muscles in your right arm, then your left hand and your left arm. Keep each muscle group tight for five seconds. Then let them go and see how relaxed your muscles feel. 3. Next, tighten the muscles in your forehead, around your eyes and in your cheeks. Keep them tense for five seconds and then let them go. 4. Pull your toes toward your head. Tighten the muscles in your calf. Then tighten the muscles in your knee and your thigh. Keep your muscles tight for a few seconds. Release the tension. Relax your muscles. Practice this exercise when you feel tense. Also try picturing yourself in one of your favorite, restful settings: 1. Imagine that you are in a lovely, restful place, such as a quiet beach or a mountain cabin. Breathe in and out as fully as you can. Open your senses to everything around you. Feel the sun on your face. Here the sound of the breeze moving through the trees. 2. Let your body relax. Keep the image of your favorite place in your mind. If other thoughts come into your mind, let them go. Continue on. Refocus on your restful setting. Spend a few minutes in your favorite place when you feel anxious or tense. Meditation is another technique that may help you learn to relax. It helps clear your mind of distracting thoughts and worries. Meditation can alter how you see and respond to the world around you. Research shows that meditation can have positive effects on your overall health and well being. Talk to your healthcare providers for more information on meditation and how it may help you mentally and physically.
DEALING WITH YOUR FEELINGS When it comes to living with lung disease, it is normal to feel anxious and a little overwhelmed. It is also normal to feel depressed. Depression may come and go. You may think you are over your blue phase, only to find it return without warning. These feelings are normal and even healthy if they help you accept your health condition and give you the will to move forward with your treatment. But some people have trouble working through strong feelings. For example, a person who is angry or denies that he has lung disease may refuse to take medication or stop smoking. Being unable to move forward makes it difficult to take an active role in your treatment. If you’re having trouble dealing with your feelings it may help to know that having lung disease does not mean that you cannot do any of the things you enjoy. You may need to make a few changes, but you can still do many of the activities you like to do. Thoughts have a powerful affect on feelings. If your thoughts are negative, you can end up feeling down. On the other hand, positive thoughts will give you the confidence you need to cope with lung disease. Ask for help if you need it It is not unusual to have some degree of depression after being diagnosed with lung disease. If you are still depressed after 6 to 8 weeks, seek help. Depression is not something you just have to work through yourself. With so much help available, there’s no reason to suffer needlessly. Even people who know you best may not realize how you feel. It’s up to you to reach out for help. Let your doctor know if you are depressed. Participating in counseling and/or taking medications can reduce the symptoms and improve the quality of your life. Joining a pulmonary rehab program also will help you deal with anxiety and depression. The staff can work with you on ways to cope. You also will meet other people who have gone through many of the same emotions you are experiencing. Talking about your feelings will help you feel less alone.
PACING YOURSELF Pacing yourself is one of the most important things you will have to learn. The amount of activity you can do may change from one day to the next. For example, there will be days when you know that you need to take it easy. On other days, you may feel up to doing a special task that you have been putting off. It is good to extend yourself if it is done with a little common sense. These suggestions will help. • Wait for an hour or more after eating to do your activities. Digestion draws blood and oxygen away from your muscles, leaving them less able to cope with extra demands. • Don’t rush. Break the activity into sections. Rest between each section. • Do pursed-lip breathing while you do your activities. Exhale during the part of the activity that requires exertion. This allows you to do more with less shortness of breath. Energy-saving suggestions Bathing • Bathe in lukewarm water. Being around hot water can make you very tired. Keep the door open a crack to let the steam out. Steam from hot water makes breathing more difficult. Use the exhaust fan if you have one. • Install hand rails around the bathtub for better support. If you take a shower, install a handheld shower head with a flexible cord. Sit on a plastic bath bench while you bathe. • Put on a thick terry robe when you are done bathing. This will keep you from having to dry your body all over. Just blot with the robe. • If you use oxygen through a long tube, you may find bathing easier if the tube is passed over the shower curtain rod and out of the way. 34
Grooming and dressing • Sit to brush your teeth, shave, put on makeup or do your hair. Use liquid or gel-type hair products and roll-on or solid-type deodorant. Exhale through pursed lips as you do these activities. • Sit to dress. Dress the lower part of your body first. Place your underwear inside your pants and put them on together. When putting on socks and shoes, use a stool. Use a long-handled shoe horn to put on your shoes. Wear slip-on or velcro-fastened shoes. Lifting, toting and climbing • Use a utility cart on wheels to carry everything that needs to be moved from one place to another. Make sure the cart has two or three shelves. If you have a two-story home, put a cart on each floor. • When climbing stairs, use stair rails. Climb two or three steps as you exhale through pursed lips. Stop and rest as you breathe in. Keep going. Place a chair to sit or lean on at the top of the stairs. Shopping and making meals • Make out a detailed list including sizes and brand names. Plan your list according to the layout of the store. • If you are going shopping with oxygen, find a shopping cart on your way into the store. Put your oxygen pack in the cart. • When shopping for groceries, ask the sacker to pack your bags lightly so that they are easier to lift. If you have a large grocery order, have all the spoilable items packed in separate bags. When you get home, you can put away the items that need to go into the refrigerator first and leave the rest for later if you want to. Use a wheeled cart to get the sacks from your car to your home. • When making meals, place a stool or chair in the kitchen. When possible, sit to make meals and do clean up. • Use energy-saving appliances, such as a microwave, blender and crock-pot when possible or use non-stick, light-weight pans that are easy to handle or line your pans with foil for easy clean up. Make twice as much food as you need and freeze the leftovers. 35
TAKING CARE OF YOURSELF People who have lung disease are more likely to develop lung infections, which can cause further damage to the lungs. To prevent infections and illness, wash your hands often. Most germs that cause infections are spread through your hands. Use a hand sanitizer between washings and after touching items that other people have touched. Stay away from crowded places, especially during the winter when people have colds or the flu. Get a flu vaccination every year. Ask your doctor about getting a pneumonia vaccination as well. It’s important to report changes in your symptoms right away so that treatment can begin quickly. Sometimes changes are more likely to be noticed by other people. That’s why it is important to share this information with those who are close to you. A change or increase in your symptoms may be a sign of a respiratory infection or another type of problem. Symptoms do not go away when they are ignored. Call the doctor if you have any of these symptoms: • increase or decrease in the amount of mucus • increase in the thickness or stickiness of mucus • change in the color of mucus (yellow/green/grey/blood-tinged) • more wheezing and/or coughing than usual • fever or the chills • more fatigue than usual • swelling in the ankles or legs, or puffiness around the eyes • heart palpitations or a rapid heartbeat • unexplained increase or decrease in weight
A FINAL WORD While lung disease can’t be cured, it can be managed. How well your lung disease is managed is up to you. Find out what you need to do to stay healthy and active. Contact your healthcare provider if you have any questions or concerns.
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This NEWLY UPDATED 2019/20 edition covers more information about chronic obstructive lung disease (COPD). Follows AACVPR guidelines and curr...