COPD chronic obstructive pulmonary disease self care workbook information and tools to help manage your condition and improve your health!
COPD self care workbook Table of Contents UNDERSTANDING COPD 1 REDUCING RISKS 2 TAKING MEDICATION 3 MANAGING STRESS 6 MONITORING SETTING GOALS HEALTHY EATING 8 10 12 BEING ACTIVE 13 Visiting Nurse Association of Boston This COPD Self Care Workbook was produced in with information and materials produced by the Visiting Nurse Association of Boston, Quality Insights of Pennsylvania, and ACCE Healthcare Technology Foundation & ECRI Institute. All rights reserved.
UNDERSTANDING COPD What does COPD mean? Chronic obstructive pulmonary disease (COPD) refers to a group of lung diseases that block airflow and make breathing difficult. Symptoms of COPD Shortness of breath, wheezing, chest tightness, and lack of energy Chronic cough that produces sputum that may be clear, white, yellow or greenish Blueness of the lips or fingernail beds (cyanosis) Frequent respiratory infections Unintended weight loss COPD can be managed This booklet was put together to help you understand your role in keeping your COPD under control. Self-care includes: 1) Knowing what COPD is and understanding your role in managing your condition 2) Taking your medicine as ordered by your physician 3) Eating Well 4) Exercising and staying active 5) Monitoring yourself for symptoms and taking action right away when they occur 6) Seeing your physician regularly How does your shortness of breath affect you? I become When I a little short of breath somewhat short of breath very short of breath get dressed bathe make meals eat do laundry do housework walk around inside my house walk around outside Visiting Nurse Association of Boston - COPD Self Care Workbook Page 1
REDUCING RISKS HOME OXYGEN STORAGE AND SAFETY Using home oxygen increases the risk of fires and burns. It is important to know how to properly handle and use home oxygen to ensure your safety and the safety of all those around you. When oxygen is used in confined spaces, such as your home or car, the amount of oxygen in the air, furniture, clothing, and hair goes up; making it easier for a fire to start and spread. When more oxygen is in the air, fires will burn hotter and faster. Here are some ways to reduce your risk of fires: Post signs around your home indicating that oxygen is in use. Make sure that absolutely NO SMOKING occurs in the home or in the car when oxygen is in use. Store oxygen away from sunlight and heat and make sure it is upright (as recommended by the vendor) Keep oxygen at least 5-10 feet away from an open flame or heat source. Heat sources include: > appliances > cigarettes > gas stoves > matches & lighters > candles > electric razors > hair dryers > space heaters When using oxygen, don t use oil, grease or petroleum-based products. Avoid using petroleumbased lotions or creams, like Vaseline, on your face or upper chest. Have a back-up portable oxygen cylinder in case of power or oxygen concentrator failure Smoking SAFETY Never smoke while using oxygen or near an oxygen supply. In fact, no one should smoke in your home if oxygen is present the fire danger is too great. While using oxygen outside your home, it is important to stay away from anyone who might be smoking. If you smoke: 1) Disconnect the oxygen 2) Wait 10 minutes 3) Go outside to smoke. This gives the oxygen time to come off your hair and clothes into the open air. Please note that this is not a safe way to smoke but is less risky than smoking indoors. Home Fire Safety Make sure your home has working smoke alarms and fire extinguishers. It is always a good idea to have an escape plan in the event of a fire. If there is a fire involving oxygen, act quickly and do the following (if possible and if safe to do so): Shut off the oxygen supply or remove tubing from supply Get away from the oxygen delivery device, oxygen supply, and the fire If the fire is on you, remove the oxygen delivery device, stop, drop, roll, and pat out any fire Activate the area fire alarm and/or notify 911 Contain the fire by shutting room doors and extinguish the fire with water or a fire extinguisher Page 2 Visiting Nurse Association of Boston - COPD Self Care Workbook
TAKING MEDICATION Several types of medicines can be used to manage COPD. Your VNA of Boston clinician will help make sure you understand all of your medicines. Always check before taking over-the-counter medicine or herbal supplements. Some of these medicines can be harmful for patients with COPD. Inhaled medicines are often taken incorrectly. Your VNA of Boston clinician will watch you use your inhaler and give you tips on using your inhaler better if necessary. Types of COPD MEDICINES Inhaled bronchodilators (short acting) These drugs work by relaxing and opening up your airways. This makes it easier for you to breathe. They are usually taken every 4-6 hours. I am using: Inhaled bronchodilators (long acting) These drugs work by relaxing and opening up your airways, making it easier for you to breathe. They take effect more slowly than short acting bronchodilators and work for a longer period of time. They are usually taken every 12 hours. I am using: Inhaled Corticosteroids These drugs decrease inflammation and swelling in your airways. They decrease the amount of mucous your airways produce. Rinse your mouth out after you use inhaled corticosteroids. I am using: Oral Corticosteroids (pills) These drugs decrease inflammation and swelling in your airways. They decrease the amount of mucous your airways produce. Oral corticosteroids are used only for short periods of time when your symptoms have worsened. I am taking: Oxygen If your oxygen blood level is low, your physician will prescribe oxygen. You may need to use it all of the time, just during certain times of day, or with activities such as sleep or exercise. It is very important that you use your oxygen as your physician has ordered it oxygen will help you feel better and be more active. A medical supply company will deliver and teach you about your oxygen. Your VNA of Boston clinician will also teach you how to manage your oxygen at home and when you go out. I am using: Visiting Nurse Association of Boston - COPD Self Care Workbook Page 3
TAKING MEDICATION Metered Dose Inhaler A metered-dose inhaler is a handheld device that delivers a specific amount of medication to your lungs. Each inhaler consists of a pressurized canister of medicine in a plastic holder with a mouthpiece. When sprayed, it gives a reliable, consistent dose of medication. How to Use a Metered Dose Inhaler 1) Shake your inhaler for 10 seconds 2) Take off the cap 3) Breathe in slowly 4) Breathe out slowly 5) Put the mouthpiece in your mouth 6) While taking a deep breath, push down on the inhaler, 7) Hold your breath and count to 10 8) Breathe out slowly 9) Wait one minute before taking another puff 10) Rinse your mouth with water after taking the last puff TIPS Care of Meter Dose Inhaler Storage Cleaning Your VNA of Boston clinician will help you find out how many puffs to take each day and how many days your inhaler will last. Using a permanent market, write the date you will need a refill on your inhaler. Always get your refill inhaler a few days before the old will run out. Keep your inhaler in a dry place at room temperature. DO NOT keep your inhaler in the refrigerator. DO NOT keep your inhaler on the top of a heater or by a very sunny window. DO NOT leave your inhaler in a parked car. DO NOT keep your inhaler in the bathroom or by the kitchen sink. Clean your inhaler once a week. NEVER put the metal part of the inhaler in water! Remove the canister from the plastic holder. Rinse the plastic holder with warm water. Dry well. Page 4 Visiting Nurse Association of Boston - COPD Self Care Workbook
TAKING MEDICATION Metered Dose Inhaler with spacer Metered dose inhalers are sometimes used with an added on device called a spacer. A spacer is a 4-8 inch tube that fits on the end of the metered dose inhaler mouthpiece. A spacer: Helps you to breathe at your own pace Allows more medicine to reach your lungs Prevents medicine from escaping into the air THIS WAY UP How to Use a Metered Dose Inhaler with Spacer 1) Shake your inhaler for 10 seconds. 2) Remove cap from inhaler and insert mouthpiece into flat end of Spacer. 3) Take a deep breath in and blow out slowly. 4) Place tip of Spacer in your mouth. 5) Push down on inhaler to deliver 1 dose of medication. 6) With Spacer tip in your mouth, take a slow deep breath in. 7) Hold your breath for about 10 seconds. 8) Breathe out slowly and then wait about 1 minute before taking another dose. Care of Meter Dose Inhaler with spacer Cleaning When to Clean 1) Clean your spacer before the first time you use it 2) Wipe off the spacer mouthpiece daily and thoroughly clean the entire spacer once a week. how to clean 1) Fill a large bowl with warm water and add dishwashing soap. 2) Take the tip and rubber flat piece off of your spacer and put them in the bowl of soapy water. 3) Soak the tip, rubber flat piece, and any other removable parts of the spacer for 15 minutes. 4) After 15 minutes, remove the parts from the soapy water and shake them gently to remove excess water. 5) Rinse the parts in warm tap water and place them on a clean towel to air dry. 6) Make sure the parts are completely dry before reassembly. Visiting Nurse Association of Boston - COPD Self Care Workbook Page 5
MANAGING STRESS REDUCING ANXIETY Anxiety is a common companion of people with breathing troubles. Increased anxiety may result in shallow, rapid breathing and thinking you might never catch your breath. Relaxation techniques are very effective in decreasing anxiety, and in turn, make breathing easier. These techniques range from simple deep breathing to muscle relaxation and guided imagery. Practicing these techniques every day will ensure you are ready to use them if/when needed. Relax and Be a S.T.A.R! Each of the following three anxiety reduction techniques are broken out into four parts: Stop > Think > Act > Relax TECHNIQUE #1: BELLY BREATHING STOP: Stop what you are doing and find a comfortable place to stand or sit down. THINK: 1 Think about a specific place that always makes you feel happy and relaxed. ACT: Relax your Neck and Shoulders Place your hands on your belly Breathe in slowly through your Nose as you count to 3 letting your belly expand or come out as far as you can Purse your lips in a whistling position as you exhale to a count of 5 or 6 and flatten your belly RELAX: Your body will relax as you breathe in and out and you will feel much less anxious. Page 6 Visiting Nurse Association of Boston - COPD Self Care Workbook
MANAGING STRESS STOP: Relax and Be a S.T.A.R! TECHNIQUE #2: WHOLE BODY BREATHING Stop what you are doing and find a quiet, comfortable place to sit or lie down. THINK: Think about how wonderful it will feel to help your body become 2 less anxious and more relaxed. ACT: Close your eyes and take 2 or 3 slow, deep breaths in and out. As you take your next breath in, tighten the muscles in your feet and hold as you count to 3. Then relax them as you exhale and count to 3. Continue this with the muscles in your legs, then move up your abdomen, chest, arms and face/ neck. After you are finished, repeat with all your muscles at once. Remembering to tighten the muscles as you breathe in and relax them as you breathe out. RELAX: Your body will begin to relax and you will feel much less anxious as you breathe in and out and tighten and relax the muscles in your body. TECHNIQUE #3: IMAGINE YOUR HAPPY PLACE STOP: Stop what you are doing and find a comfortable place to stand or sit down. THINK: 3 Think about a place that always makes you feel happy and relaxed. ACT: First close your eyes. Choose a real or imagined place where you feel at peace, it can be anywhere; a place from the past, a place you have visited, or maybe a place you would like to visit. Now slowly start to imagine what this place looks like it. For example, if it was the kitchen of the house you grew up in, you need to remember as many details as possible, the curtains on the windows, the potholders on the stove, where your mother sat, even what your favorite smells were. Then start to imagine yourself in this place and what you would be doing there. RELAX: Your body will relax as you breathe in and out and you will feel much less anxious. Visiting Nurse Association of Boston - COPD Self Care Workbook Page 7
MONITORING Your Action Plan Use this guide to help report changes in your symptoms to your physician or VNA of Boston clinician. You are doing WELL when: You can do your normal activities You have no changes in your symptoms Your usual medicines are controlling your symptoms Call your VNA of Boston clinician or physician when: You have increased shortness of breath with usual activity You are coughing more than usual You have increased sputum or changes in color You have to use short acting medicines more often You feel more tired or restless Call your physician RIGHT AWAY when: You have severe shortness of breath, or shortness of breath at rest You have chest pain that doesn t go away Your lips or fingernails turn gray or blue You feel unusually sleepy Prevent COPD Symptoms from getting worse The following actions will help keep your COPD under control: Stop smoking even if already have COPD, quitting smoking can help your lungs work better Get a flu vaccine every year Get a pneumonia vaccine your physician may recommend that you get it every 5 to 10 years Decrease your risk of infection: P Wash your hands often P Stay away from persons with colds or flu Avoid exposure to things that irritate your lungs: P Extreme weather very hot or very cold P Tobacco smoke P Smog stay indoors as much as possible during alert times P Perfumes or scented air fresheners Page 8 Visiting Nurse Association of Boston - COPD Self Care Workbook
MONITORING Health Monitoring log Day Call If Date Date Date Date Date Date Temperature Weight Heart Rate Blood Pressure Oxygen Level Blood Sugar Coumadin Dose/INR Value Pain Score Dyspnea Score Visiting Nurse Association of Boston - COPD Self Care Workbook Page 9
SETTING GOALS COPD Self care Goals Eating Healthy Preventing Respiratory Infections Stop Smoking Using Oxygen Using Inhalers or Breathing Treatments Dealing with Shortness of Breath Actions to Take for Increased Symptoms Monitoring Symptoms Exercise and Staying Active My goal for the next (Short term) is How often? (Measured?) Possible problems in meeting my goal: Plan for dealing with those problems Things that would help me meet my goal: (Achievable) How this will help me (Relevant): Page 10 Visiting Nurse Association of Boston - COPD Self Care Workbook
SETTING GOALS My goal for the next (Short term) is How often? (Measured?) Possible problems in meeting my goal: Plan for dealing with those problems Things that would help me meet my goal: (Achievable) How this will help me (Relevant): My goal for the next (Short term) is How often? (Measured?) Possible problems in meeting my goal: Plan for dealing with those problems Things that would help me meet my goal: (Achievable) How this will help me (Relevant): My goal for the next (Short term) is How often? (Measured?) Possible problems in meeting my goal: Plan for dealing with those problems Things that would help me meet my goal: (Achievable) How this will help me (Relevant): Visiting Nurse Association of Boston - COPD Self Care Workbook Page 11
HEALTHY EATING Diet & Nutrition It is important to eat a healthy diet when you have COPD. If you are underweight and do not eat enough, you will have less energy. If you are overweight, it will be harder to be active and you may have more shortness of breath. Your VNA of Boston clinician or a dietitian may help you review your own diet, help you read food labels, and give you lists of healthy foods. Fruits and vegetables and protein foods such as meat, fish, eggs, and milk are good for you. There are things you can do that make living with COPD easier. Check off the things you think you can do. Eat a balanced diet with enough calories Ask your physician or VNA of Boston clinician if vitamin supplements would be helpful Drink enough fluids this helps keep your mucous looser Eat smaller meals more often Decrease the amount of gas forming foods you eat they make your stomach fuller. This may increase shortness of breath. Include fiber in your diet to decrease constipation Eat slowly and talk less while you eat Sit in a chair that allows for good posture while you eat Avoid activity or exercise for an hour after you eat Eating a diet lower in carbohydrates may decrease shortness of breath and improve your ability to exercise Page 12 Visiting Nurse Association of Boston - COPD Self Care Workbook
BEING ACTIVE Staying Active and Safe Exercise is very important when you have COPD. Even if you have severe shortness of breath, you can benefit from an exercise program. Exercises may include chair exercises, walking, or using a stationary bike. Exercise will: P Improve your ability to cope with shortness of breath P Increase your energy and make you feel less tired P Make you feel better Before starting an exercise program, your COPD symptoms should be under control. It is important to start slowly when you are not used to exercise. A VNA of Boston physical therapist can help you begin your exercise program. You will be taught ways to safely exercise such as: P Using pursed lip breathing to control shortness of breath P Pacing yourself and stopping to rest when needed P Rating your shortness of breath (see Dyspnea Scale- next page) P Your physician may tell you to use a short acting bronchodilator before exerciseyou may use a pulse ox monitor to check your oxygen level while you exercise It is important to exercise at least 3-5 times per week, starting off slowly and gradually increasing, as tolerated, both the number of repetitions of the lower extremity exercises and the time spent walking. Stop exercising and rest whenever you experience an increase in shortness of breath. Visiting Nurse Association of Boston - COPD Self Care Workbook Page 13
BEING ACTIVE Tips to Help You Save Your Strength and Breathe Easier Plan Ahead: Make a list of what you have to do each day and do the most important thing first Do things slowly and spread your activities out throughout the day Don't start doing something right after you have eaten. Wait about 30 minutes When the weather is very hot or cold, don't do as much as you normally do Questions to Ask Yourself Before Starting an Activity: Should I do this activity? Why is this activity needed? When is the best time to do this activity? How can I make the activity easier? Am I comfortable completing the activity? Work Easier to Save Energy: Rest before you feel tired If you get tired STOP and REST even if you haven't finished doing what you wanted to do Switch between easy activities with hard activities DO NOT RUSH. Work at a slow speed Use pursed lip breathing as you do activities Wear Oxygen as needed Remember every day will be different. Use your time and energy to do the things that are most important to you. Be willing to try doing things in a different way Sit to Work: As much as possible, sit when you prepare food and cook Sit when you wash dishes Dress/undress, shave, put on makeup, shower, dry off, brushing teeth, bathe Sitting uses less energy than standing Be Good to Your Muscles: Slide items instead of lifting or carrying Bend at the knees to lift things Organization of Kitchen: Store frequently used items at chest level or on counter tops Let dishes soak Keep frequently used dishes and pots in the strainer or on counter top Leave pots and pans used daily on stove top or in strainer Avoid clutter and remove unnecessary items Page 14 Visiting Nurse Association of Boston - COPD Self Care Workbook
Tips to Help You Save Your Strength and Breathe Easier Cooking: Use your pursed lip breathing Plan the menu in advance Break the cooking into steps, don't try to do it all at once Wear an apron with deep pockets to help with carrying items Used a wheeled cart to transport items or walker basket Line pans with aluminum foil so they are easier to wash after cooking Baking is easier than frying when cooking food Slide pans and dishes along counter instead of lifting Shopping Tips: Make a list before going shopping Organize list by store aisle Shop when the store is not crowded Use scooter when available Ask for assistance if needed BEING ACTIVE Dressing Tips: If you require oxygen wear it when dressing and bathing Wear button up clothing instead of pullover clothing Wear loose fitting clothing for easier breathing Before dressing, collect items needed for the task and place them within reach Lay out clothes/items night before, if morning is too hard Sit while putting on underwear, pants, socks and shoes Put on underwear and pants at the same time Wear slip on shoes that have good support Bathing Tips: Bathe or shower when you have the most energy Sit while sponge bathing or showering Use a bench or shower chair as well as a hand held shower Use a robe instead of a towel to dry off Use moderate temperature water instead of hot water Keep door slightly open and turn on bath fan Shower when someone is in the home if possible If you have a lifeline, always wear it in the shower Visiting Nurse Association of Boston - COPD Self Care Workbook Page 15
BEING ACTIVE L.E.G.S. - Lower Extremities Get Strong Regular exercise combined with a healthy diet can improve activity tolerance and make it easier to breathe. While no single exercise is ideal for everyone, these are some general exercises that almost everyone can do. L.E.G.S EXERCISES TO REDUCE SHORTNESS OF BREATH Breathing Exercises Leg Exercises Pursed Lips Breathing Breathe IN through the nose and OUT through pursed lips (smell the roses and blow out the candles). It should take twice as long to blow the air out as it does to breath in (breathe in for a count of 2, breathe out for a count of 4). Repeat 5 times. Deep Breathing Standing or sitting, place both hands on the belly. Take a deep breath IN through the nose, expanding the belly; then breath OUT through pursed lips, contracting the belly. Repeat 5 times. On Back Lie on back and place one hand on abdomen and the other hand over mid chest. Breath in slowly and deeply through the nose. The abdomen should rise, but the upper chest should remain still and relaxed. Breath out slowly through pursed lips Repeat 5 to 10 times. Heal and Toe Raises Sitting or lying down, point toes up and then push toes down, raising heels. Repeat 20 times. Heel and Toe Raises In a standing position, go up on toes and down. Then back on heels. Hold on to sturdy counter or kitchen sink for support. Repeat 10 times. Leg Kicks Tighten muscle in top of thigh and straighten out knee. Hold 3 seconds while counting out loud. Keep thigh on chair. Repeat with other leg. Repeat 10 times. Walk at a comfortable pace for 1-3 minutes, 3-5 times a day breathing slowly and steadily. If you feel short of breath, stop walking and rest; practice your pursed lip and deep breathing. If you don t have access to a hallway or other space that is safe for walking, you can stand holding on to a counter and march in place instead. Every week or two, try to increase the time you walk (or march). Page 16 Walking Visiting Nurse Association of Boston - COPD Self Care Workbook
BEING ACTIVE Dyspnea Scale You should monitor yourself for fatigue and shortness of breath when you exercise. Your home care clinician will teach you how to use the Dyspnea Scale so that you can rate your shortness of breath and/or fatigue during activity and exercise. TOO BREATHLESS TO LEAVE THE HOUSE (TOO TIRED TO DO ANYTHING) SHORT OF BREATH AT REST 4 STOPS FOR BREATH WHILE WALKING AT A SLOWER PACE ON LEVEL GROUND (REALLY TIRED) SHORT OF BREATH WITH MINIMAL EXERTION (EATING, TALKING) OR AGITATION 3 MUST WALK AT A SLOWER PACE OR BECOMES BREATHLESS WHEN WALKING AT NORMAL PACE (TIRED) SHORT OF BREATH WITH MODERATE EXERTION (WALKING <20 FT, TOILETING, DRESSING) 2 STOPS FOR BREATH WHEN HURRYING OR WALKING UPHILL (A LITTLE TIRED) SHORT OF BREATH WHEN WALKING >20 FT OR CLIMBING STAIRS 1 NOT BREATHLESS AT ALL EXCEPT WITH STRENUOUS EXERCISE (NOT TIRED AT ALL) NEVER SHORT OF BREATH 0 Words you may use to describe or indicate shortness of breath Tightness in the chest/throat (asthma) Suffocation (CHF) Hungry for air Heavy breathing Hard to breath Coughing Not getting enough air Breathing takes more effort (COPD) Can t take a deep breath Can t let a breath out completely Can only take shallow breaths Can t eat or sleep well any more Wheezy or squeaky breathing Visiting Nurse Association of Boston - COPD Self Care Workbook Page 17
The Visiting Nurse Association of Boston & Affiliates, with a commitment to all who need us, provides the highest quality and most efficient solutions for keeping people independent, at home and in the community, maximizing their health and quality of life. Certified home health care services are provided through the VNA of Boston, private pay services through VNA Private Care, and end-of-life support through VNA Hospice Care. (617) 426-5555 www.bostonvna.org VNA Hospice Care provides comprehensive care, comfort, and support to patients and families facing the challenges of life-limiting illness and loss. Anyone can make a referral to hospice. All calls are handled with sensitivity and are kept strictly confidential. (781) 569-2888 www.vnahospicecare.org VNA Private Care s home health aides, companions, and nurses provide clients of all ages with comprehensive personal and health care services not covered by typical insurance plans. Whether it s a few hours a week or a few hours a day, private care services provide independence for the client and peace of mind for the family. (781) 431-1484 www.vnaprivatecare.com Statement of Confidentiality This handbook may contain protected health information. Patients are responsible for reviewing the handbook and persons other than the patient and their health care providers must have the patient s permission to view its contents. Please speak with your clinician or call the VNA of Boston at (617) 426-5555 if you have any questions. April 2013