Lymphedema Management Self-‐Care Workbook

 Lymphedema Management Self-­‐Care Workbook© Created by Valerie W. Collins, PT, CLT-­‐LANA [email protected] Theresa Gilliam, MS, OTR/L, ATP, CLT-­‐LANA [email protected] May 2012 Carolina Pointe II 6011 Farrington Road Suite 304 Chapel Hill 27517 Phone: (919) 957-­‐6600 Fax: (919) 489-­‐9173 http://unclineberger.org/ccsp/programs/integrative-­‐medicine Lymphedema Management Work Book Table of Contents What is Lymphedema?..................................................................................................................... 3 What are the causes of lymphedema? .............................................................................................. 3 What are the signs and symptoms of lymphedema? ........................................................................ 3 How does lymphedema change over time?...................................................................................... 4 How can I reduce my risk of lymphedema?..................................................................................... 5 How does the lymphatic system work?............................................................................................ 5 What is the treatment for lymphedema? .......................................................................................... 8 The Four Components of Treatment ............................................................................................ 8 Manual Lymph Drainage (MLD) ............................................................................................ 8 Compression Therapy ............................................................................................................ 9 Skin Care.................................................................................................................................. 9 Exercise ................................................................................................................................... 9 Scar Massage.............................................................................................................................. 12 Surgical Scars ............................................................................................................................. 12 How can I reduce my lymphedema symptoms? ........................................................................ 14 Get Moving ................................................................................................................................ 15 A Sample Walking Program ...................................................................................................... 16 Lymphatic Pumping Exercises................................................................................................... 17 What can I expect for treatment of a swelling disorder? ............................................................... 22 Compression Wraps ................................................................................................................... 25 How do I monitor swelling changes in my limb? .......................................................................... 31 What should I do first if I notice swelling changes? ...................................................................... 31 Self- Measuring .............................................................................................................................. 32 Lymphedema Resources ................................................................................................................ 34 Reference List: ............................................................................................................................... 37 About the authors ........................................................................................................................... 39 Version 5.12/page 2
Lymphedema Management Work Book What is Lymphedema? Lymphedema is the swelling and soft tissue changes that occur in the area of the body where an injury has occurred to the lymphatic system. The lymphatic system plays a role in circulation and immune function. It carries fluid, waste products, bacteria, and protein molecules from the tissues through a series of vessels and nodes. The lymph nodes break down and eliminate the waste products and the protein rich fluid is brought back to the heart to rejoin the circulatory system. If the lymph vessels are unable to transport lymph fluid, it begins to accumulate in the tissues causing swelling. The protein molecules that remain in the skin cause an increase in scar tissue, swelling, and thickening of the skin. This build-­‐up of protein-­‐rich lymph fluid in the skin is known as lymphedema. Once this condition occurs, the swelling may increase if not treated. Lymphedema is a chronic, progressive condition that requires lifetime management, but fortunately there is treatment. What are the causes of lymphedema? Lymphedema can be caused by any trauma that damages the skin because the lymph vessels reside there. Lymphedema most often develops in one arm or leg, but may be present anywhere in the body. Primary Lymphedema is caused by congenital malformations of the lymphatic system. These malformations are most common in women. They may be present at birth, or may develop later, often during puberty or pregnancy. Primary lymphedema is most common in the legs, but may also occur in other body parts. Secondary Lymphedema is a result of damage or trauma to the lymphatic system. Cancer treatments, such as surgery or radiation, are the most common causes, though not everyone who has these treatments develops lymphedema. Lymphedema may start immediately after surgery, or it may develop years later, or with infections or injuries to the skin. Untreated vein problems in the legs can also develop into lymphedema. What are the signs and symptoms of lymphedema? * Aching, discomfort, soreness or pain in the affected area * Feelings of heaviness, fullness, or tightness in the skin * Less movement or flexibility in a joint * Clothing, bras, underwear, jewelry, or shoes feel tight * Swelling that fluctuates and may leave an indented spot in the skin when pressed * Numbness/tingling in the involved limb Version 5.12/page 3
Lymphedema Management Work Book How does lymphedema change over time? Stage O: (Sub Clinical) The lymph nodes have been removed or radiated. There is no noticeable swelling, but the person is “AT RISK” of developing lymphedema. Stage I: (Spontaneously Reversible) The swelling is soft, goes up and down and is usually better upon awakening. Pitting of the skin may be noted (after pressing the skin, an indentation remains). Stage II: (Spontaneously Irreversible) The swelling does not go completely away and the skin starts to thicken and harden. Stage III: (Elephantiasis) The swelling has increased significantly and never goes away. The skin is permanently changed and is dense, thick and fibrotic. Version 5.12/page 4
Lymphedema Management Work Book How can I reduce my risk of lymphedema? SKIN CARE: Avoid injuries to the skin when possible-anything that causes the skin
to get red or hot may increase swelling
• Keep skin clean and moisturized.
• Watch water temperature: avoid prolonged (greater than 15 minutes) exposure to
heat, particularly hot tubs and saunas. Avoid placing the at risk area in water
temperatures above 102 F. Avoid exposure to extreme cold.
• Protect exposed skin with sunscreen and insect repellent
• Inform your health care providers: No injections, acupuncture, or blood pressure
cuffs on the affected limb, let your massage therapist know of your risk.
• No piercings or tattoos in the affected area.
• Take care with shaving and nail/cuticle care. Be careful of pet scratches.
• Wear gloves when doing activities that may cause skin injury (i.e. Dishes, working in
the garden or with tools, using chemicals)
• If scratches/punctures occur, wash skin with soap and water, apply antibiotics and
observe for signs of infection (see below).
• If symptoms occur, contact your physician immediately for early treatment
of a possible infection/CELLULITIS.
a. Signs of infection (fever, vomiting, chills, red and hot skin)
b. Itching, rash, fungal infections, or any other unusual changes on the
skin of the affected quadrant
c. Increase in swelling in your affected area
d. Pain in the affected quadrant
If your doctor is not available, go to a walk-in clinic or emergency
room. Antibiotics are necessary to treat this type of infection and
time is critical. Remove any compression and do not perform selfMLD as this could spread the infection. Compression and MLD can be
restarted 72 hours after antibiotics have been started and the skin
looks better.
ACTIVITIES/EXERCISE/LIFESTYLE:
Elevate your limb whenever possible throughout the day
Those “At Risk” may benefit from use of compression garment with exercise
Those with lymphedema must wear compression garments with exercise
Gradually build up duration and intensity of exercise and take frequent rest breaks to allow
for limb recovery
Monitor at risk area during and after activity for changes in size, shape, skin texture,
soreness, or heaviness
Maintain optimal body weight as obesity has a negative effect on lymphatic function. Follow
a low salt, low fat diet with emphasis on fruits and vegetables
Air travel requires compression garment wear for both those “At Risk” and with
lymphedema. Wear your garment for several hours after the flight.
CLOTHING/COMPRESSION: Clothing that is too tight may restrict the proper flow of
lymph. Compression garments should be well fitting and worn with strenuous activity (ie.
Weight lifting, prolonged standing, running) or air flight. Replace compression garments that
are worn daily every 4-6 months.
ADDITIONAL PRACTICES SPECIFIC TO LEG LYMPHEDEMA:
Avoid prolonged standing, sitting, or crossing legs
Wear proper, well fitting hosiery and footwear with minimal heels
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Lymphedema Management Work Book How does the lymphatic system work? The heart pumps oxygen rich blood out of the aorta to supply the body with nutrients. The
travels outward from the largest vessels called arteries, which continue to get smaller
blood
as until they become capillaries.
in size
Fluids
leak out from the capillaries into tissues to nourish them, then are recycled and
brought
back into the blood circulation. The blood reabsorbs 60%-80% of the fluid and the
lymphatic system filters and recycles the remaining water. When the lymph system isn’t
working correctly, fluid stays in the tissues and causes swelling. The lymph is also
responsible
for removing waste products from the skin. When the waste products get
trapped
in the skin, they form scar tissue and the skin becomes thickened.
The
lymphatic system consists of lymph vessels located just under the skin, meeting up with
regional lymph nodes located in your neck, armpits, and groin area. As the lymph vessels
move fluid out of the tissues, they collect and filter waste products in the nodes, then return it
to the bloodstream.
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Lymphedema Management Work Book There are 500-­‐700 lymph nodes in the body. These are dispersed throughout the body, with several hundred in the trunk near organs, as well as many in the head and neck region. The skin of the body drains into regional lymph nodes. Imagine the body divided in half lengthwise down the middle and in half widthwise at the waistline. You would have a right upper and lower quadrant, and a left upper and lower quadrant or region. There are about 10-­‐40 regional lymph nodes in each armpit (axilla) and 50-­‐70 regional lymph nodes in the groin and pelvis. Lymph fluid from the skin normally flows towards its regional lymph nodes, despite removal or damage to the nodes. Manual lymphatic drainage techniques were developed to pass fluid across these interconnections on the trunk between the regions so that it can be reabsorbed in healthy neighboring lymph nodes. The lymph nodes are also responsible for fighting infection. All substances transported by the lymph pass through at least one lymph node, where foreign substances is filtered out and destroyed before fluid is returned to the bloodstream. Lymph nodes contain a mesh of tissue that is tightly packed with cells that fight infection. If lymph nodes are missing, or not working correctly, the affected limb and trunk are at greater risk for infection because the immune system is not functioning properly in fighting foreign substances. With an impaired lymphatic system, fluid and waste products, specifically protein, are not removed from the tissues effectively, causing problems of increased swelling and thickening of the skin. Version 5.12/page 7
Lymphedema Management Work Book What is the treatment for lymphedema? Although there is no cure for lymphedema, it can be effectively managed. Treatment regimens vary, depending on the severity of swelling and condition of the skin, but may require several weeks to months of therapeutic care. Treatment consists of two phases: 1) The intensive phase 2) The self-­‐management phase. There are four components in each phase: 1) Manual lymphatic drainage (MLD) 2) Skin Care 3) Compression 4) Exercise The goals of the first phase are to reduce the swelling, improve tissue health and fit proper compression garments and devices. The goals of the second phase are to keep and improve the gains made during the intensive phase and prevent the lymphedema from getting worse. During the intensive phase, called Complete Decongestive Therapy
(CDT), you are under the care of a lymphedema therapist. During this
time, your therapist will perform manual lymphatic drainage (MLD), use
some form of compression therapy, and teach you self care techniques to
include skin care and exercises to assist with lymphatic drainage.
Once reduction is completed and you begin a self-management phase,
you are expected to be able to take care of yourself independently or
with a caregiver. You may need occasional checkups should problems
arise.
The Four Components of Treatment Manual Lymph Drainage (MLD) This is a gentle manual treatment technique developed by Dr. Emil Vodder in the 1930’s that utilizes strokes that are adapted to the anatomy and physiology of the lymph system. MLD increases the uptake of fluid and transports the lymph to healthy vessels where it can be processed normally. A series of MLD treatments decreases the volume of the affected area. You will learn a simplified version to be performed daily as part of your home program. Version 5.12/page 8
Lymphedema Management Work Book Why should I learn MLD and perform it daily? MLD relaxes heart rate, blood flow, and respiratory rates MLD promotes the movement of fluid and waste products out of the skin, so it keeps skin from swelling or getting harder MLD stimulates the growth of new lymphatic capillaries Compression Therapy The skin’s elastic fibers and lymphatic vessels are damaged in lymphedema and the body part is always at risk for a reaccumulation of fluid. In order to prevent fluid from returning back into the skin, it is necessary to apply external compression to the limb. Depending on the amount of the swelling either garments or compression wraps are worn to reduce swelling in the limb. Once the swelling is stabilized, you will need garments for daily wear. Why should I wear compression? Compression therapy helps to reduce the hardening of the skin Compression therapy promotes fluid uptake from the skin into vessels to bring it back to the heart, keeping the swelling out of the limb Skin Care The skin with lymphedema can be dry, fragile, less elastic, and thickened. If the skin becomes cracked or injured, bacteria can enter and cause infections. Wound healing may be difficult in congested skin. Keep your skin clean with a mild, fragrance free soap, and pat skin dry rather than rubbing vigorously with a towel. Moisturize with a low pH, fragrance free lotion like Eucerin or Curel daily at bedtime during self -­‐MLD, so as not to break down the fibers of the daytime garments. Drink six 8 ounce glasses (48 ounces) of water daily. Dehydration can trigger a response in the body to increase inflammation and thus worsen lymphedema. Why should I take care of my skin? Taking care of your skin reduces the risk of infection and possible worsening of the lymphedema. Exercise It is important for individuals with lymphedema to be physically fit and maintain a healthy weight as obesity has been linked to causing and worsening lymphedema. The best type of exercise depends upon the severity and cause of the lymphedema and other co-­‐existing medical conditions. Version 5.12/page 9
Lymphedema Management Work Book Starting at an appropriate fitness level and gradually increasing activities while monitoring effects on swelling of the involved limb are important. You may return to high intensity activities such as tennis, golf, bowling, running, and mountain biking provided you did this before the onset of lymphedema, and are vigilant in monitoring your swelling. The three main types of exercise are aerobic, strengthening, and flexibility exercises. Additionally, lymphatic drainage exercises are simple movements that are performed in a sequence that pump fluid through lymphatic pathways and are best performed with compression. Aerobic exercise improves cardiovascular fitness, endurance and overall health and well being. The goal is 30 minutes of aerobic exercise, 4-­‐5 times a week, with a 60-­‐65% target heart rate. Strength training can be beneficial for you with because it will allow you to perform daily activities with less effort, thus possibly preventing injury and subsequent swelling. Flexibility exercises can minimize skin scarring and joint contractures that may lessen lymph flow. Pilates, Yoga, Tai Chi, Qigong, aquatic exercises, breathing and relaxation are other types of exercise that have health benefits. The person with lymphedema can use the benefits of any system of exercises if they follow the general safety principles listed below. 1. Always wear your compression garment if you have lymphedema. If you are “AT RISK” of lymphedema it may be beneficial to wear a compression garment. 2. Allow adequate rest intervals between sets 3. Avoid constrictive clothing or weights that wrap tightly around an extremity 4. Maintaining good hydration 5. Avoid extreme heat or overheating 6. Never exercise to the point of pain Why should I exercise? Exercise increases circulation and removal of lymphatic fluid from the skin Weight control is easier You look and feel better, have more energy and feel more confident Activity is a great way to reduce stress and beat the blues Version 5.12/page 10
Lymphedema Management Work Book You will learn self manual lymphatic drainage from your therapist Version 5.12/page 11
Lymphedema Management Work Book How do I take care of my skin and scars? Know the signs of infection and what to do: a. Signs of infection (fever, vomiting, chills, red and hot skin) b. Itching, rash, fungal infections, or any other unusual changes on the skin of the affected quadrant c. Increase in swelling in your affected area d. Pain in the affected quadrant Contact your physician immediately for early antibiotic treatment of a possible infection/CELLULITIS. If your doctor is not available, go to a walk-­‐in clinic or emergency room. Antibiotics are necessary to treat this type of infection and time is critical. Remove any compression and do not perform self-­‐MLD as this could spread the infection. Compression and MLD can be restarted 72 hours after antibiotics have been started and the skin looks better. Scar Massage (reprinted with permission from www. Lymphnotes.com) Surgical Scars Scar tissue usually heals within six weeks after surgery; however, instead of feeling soft and stretchy, a scar may still be red and tight so that it pulls and limits motions. Always check with your therapist before beginning scar massage treatment. There are two different approaches to ease scar tissue: 1. The first technique is a gentle circular draining motion in the scar itself. 2. The second technique is a firmer stretching of the skin above and below the scar first in a straight line and then in a circular motion. Gently perform scar massage for five minutes daily. Include all scars that are limiting lymph movement. Stretches use a firm motion but should not cause an uncomfortable pulling or burning sensation. It is important to spend more time on any areas that feel “stuck.” Do not use lotion when massaging a scar. This causes the fingers to slide away. After draining or stretching a scar, apply lotion or vitamin E cream to the scar. Draining the Scar Place your fingers on top of the scar and make very gentle circular pumping motions on the scar. Gently work your way down the scar and feel the tissue soften. Repeat this sequence once or twice at each session. This draining of the scar should not hurt nor should it make the scar turn red. Version 5.12/page 12
Lymphedema Management Work Book Stretching the Scar Area To stretch the skin next to the scar, place two or three fingers at the beginning of the scar and stretch the skin above the scar in a parallel direction. Then move the fingers a quarter of an inch further along the scar and repeat the stretch of the adjacent tissue. Work your way along the scar. Repeat this pattern stretching the adjacent skin below the scar. An alternative method is to follow the same pattern of finger movements using a circular motion instead of straight stretches. Work your way along the scar in a clockwise and counter clockwise fashion. Radiation Scarring The scarring processes after radiation can continue as long as six months after the last radiation treatment. Massage of this affected area should not begin until at least six weeks after the last radiation treatment and when no scabs are noticeable. Ask your therapist when you can safely begin radiation scar self-­‐massage. Radiated tissues are delicate and the skin can break easily. Take extreme care when massaging this area. Never massage these tissues if this causes pain or increased redness of the tissues. Perform only brief massage sessions at first. As the tissues continue to heal, gradually increase the length of the massage. Move your fingers in a circular motion to gently stretch the skin. If there is a pocket of hardened tissue, very gently stretching the skin until the skin feels softer, more flexible, and is less restricting of movements. After the massage, apply lotion or vitamin E cream to the scar. Ask your therapist about some products that may be beneficial for scar healing. Version 5.12/page 13
Lymphedema Management Work Book How can I reduce my lymphedema symptoms? 1. LOSE WEIGHT Obtaining and maintaining your proper body weight is critical in controlling lymphedema. If you are overweight, it is important for you to lose weight. No matter how much weight you have to lose, modest goals and a slow course will increase your chances of both losing the weight and keeping it off. Even a small weight loss (just 10% of your current weight) will help reduce your risk of developing or worsening diseases such as diabetes, high blood pressure, heart disease, stroke, gall bladder disease, arthritis, sleep apnea and breathing problems, and some types of cancers. Calculate your BMI (Body Mass Index): While this is valid for most men and women, it does have some limitations: It may overestimate body fat in athletes and others who have a muscular build. It may underestimate body fat in older persons and those who have lost muscle mass. Calculate your BMI: Go to http://www.nhlbisupport.com/bmi/ or multiply weight in pounds by 703, divide by height in inches. Divide again by height in inches. EX: 180 pound person who is 5 feet 5 inches tall: 180 x 703 = 126,540 126,540/65 = 1,946 1,946/65 = 29.9 BMI =29.9 Classifications: Underweight <18.5 Normal 18.5-­‐24.9 Overweight 25.0-­‐29.9 Obesity 30.0 or > Extreme Obesity 40.o or > Waist Circumference Measurements If most of your fat is around your waist, you are at an increased risk for heart disease and diabetes: for women > 35 inches; for men > 40 inches. Many insurance companies now pay for visits to a nutritionist, who can help create an individualized plan for you. It is important to understand that the foods you choose to eat have a direct affect on your overall health. Currently, most nutritionists recommend following a low-­‐salt, low-­‐fat diet, with emphasis on increased intake of fruits and vegetables, whole grains, low fat dairy, lean meats ,and reduction of saturated fats found in processed foods. Version 5.12/page 14
Lymphedema Management Work Book Some excellent resources for help in eating healthier: • See a nutritionist at UNC http://unclineberger.org/nutrition/ Anticancer: A New Way of Life by David Servan-­‐Schreiber • Website: The National Institute of Health/Aim for a Healthy Weight www.nhlbi.nih.gov/health/public/heart/obesity/lose_wt/index.htm 2. EXERCISE Prior to beginning any program, obtain guidelines from your doctor or therapist. How to take your pulse and find your target heart rate: Pulse: The number of times your heart beats in one minute. Place the tips of your index, second, and third fingers on the palm side of your inner wrist, below the base of the thumb. Or, you can place your index and second finger on your lower neck, near the windpipe. Press lightly until you feel blood pulsing beneath your fingers. Using a second hand on a clock, count the beats you feel in 10 seconds and multiply by 6 to get your heart rate. Normal Resting Heart Rates Age Group Children (ages 6-­‐15) Adults (age 18 and over) Normal Heart Rate at Rest 70-­‐100 beats per minute 60-­‐100 beats per minute Target Heart Rate: Certain medications for heart disease, high blood pressure, and diabetes can affect resting and target heart rates, so ask your doctor if yours is affected. Do not exercise above 85 percent of your maximum heart rate. This increases both cardiovascular and orthopedic risk and does not add any extra benefit. (220 – your age ) x .65 = beats per minute This is your training heart rate per minute Get Moving If you don’t enjoy “exercising” you can become more active by doing more everyday activities such as taking the stairs instead of the elevator, taking walking breaks during work and spending less time watching television or working on the computer. Once you are comfortable at this level, try adding more moderate activities, such as hiking, golf, light weight lifting, gardening, dancing, and bicycling. If you need structured group activities, try joining community recreational programs, the YMCA or a health club, or get a walking buddy. You can find a variety of activities for all fitness levels and budgets. Walking is a popular activity because it is safe and convenient. Below is a walking program to help you get started. Use good posture and take long, easy strides. Bend your elbows and Version 5.12/page 15
Lymphedema Management Work Book swing your arms. If you have arm lymphedema, you may want to use a walking stick to keep the arm raised higher with each arm swing. A Sample Walking Program (adapted from U.S. Department of Health and Human Services, National Institute of Health) Warm Up Exercising Cool Down Total Time Week 1 Session A Walk 5 min Brisk walk 5 min Slow walk 5 min 15 min Session B Repeat as above Session C Repeat as above Continue with at least three exercise sessions during each week of the program Week 2 Walk 5 min Brisk walk 7 min Walk 5 min 17 min Week 3 Walk 5 min Brisk walk 9 min Walk 5 min 19 min Week 4 Walk 5 min Brisk walk 11 min Walk 5 min 21 min Week 5 Walk 5 min Brisk walk 13 min Walk 5 min 23 min Week 6 Walk 5 min Brisk walk 15 min Walk 5 min 25 min Week 7 Walk 5 min Brisk walk 18 min Walk 5 min 28 min Week 8 Walk 5 min Brisk walk 20 min Walk 5 min 30 min Week 9 Walk 5 min Brisk walk 23 min Walk 5 min 33 min Week 10 Walk 5 min Brisk walk 26 min Walk 5 min 36 min Week 11 Walk 5 min Brisk walk 28 min Walk 5 min 38 min Week 12 Walk 5 min Brisk walk 30 min Walk 5 min 40 min Week 13 on: Gradually increase your brisk walking time to 30-­‐60 minutes, three to four times a week. Be sure to wear appropriate footwear. Get fitted for good walking shoes that address any foot issues you may have. Wear appropriate outdoor gear to match the weather and hydrate well before and after your walk. Don’t like to walk outside? Join a gym and use the treadmill or become a mall walker. Version 5.12/page 16
Lymphedema Management Work Book Lymphatic Pumping Exercises Decongestive exercises play an important role in managing lymphedema, especially in the initial phase of treatment when you are wearing your compression wraps. They should be done in the sequence provided. Perform each exercise at least 5 times in a gentle manner with both limbs. If you have difficulty, let your therapist know, so that changes can be made that will allow you to perform these exercises. Trunk Abdominal breathing Lie on your bed or floor or sit in a comfortable chair, knees slightly bent, feet on the floor, hands resting on your stomach. Take deep breaths, feeling your stomach rise as you breathe in, and breathe out slowly through your mouth. Repeat. Pelvic Tilt Lie on your back with feet slightly apart, knees bent and feet flat. Using your stomach muscles, tilt your pelvis and flatten your low back into the floor or bed. Hold for a count of 5. Release and repeat. Neck Neck Rotation Inhale and turn your head slowly to one side, hold for a count of 5. Exhale and return to center, repeat to the other side. Continue on each side for 5 repetitions. Head Tilt Gently bring your ear toward your shoulder, hold for 5 seconds, and bring back to center. Repeat on other side. Version 5.12/page 17
Lymphedema Management Work Book Shoulder Shoulder Shrug Inhale and lift both shoulders towards your ears. Exhale and return to a relaxed position. Shoulder Rolls Roll shoulders back making a continuous circle. If your arm is at risk or has lymphedema do these also: Shoulder Blade Squeeze Squeeze shoulder blades together by pulling them backward and toward the center of your body. Isometric Hand Press Inhale and press palms together while breathing for a count of 5, relax, and exhale. Elbow Bend Bring your hand towards your shoulder, and return arm back to the side, repeat. Version 5.12/page 18
Lymphedema Management Work Book Hand Wrist exercises With your hand in a fist, make small circles with your wrist in both directions Fist Clench Make a fist, hold for 5 seconds, then slowly open hand and straighten fingers. Active Finger Movement Palms together, move fingers away from each other, one pair at a time. Then move fingers together, moving from one side to the other. Finish with more abdominal breathing. Then rest lying down and elevate your arm on a pillow for a few minutes. Version 5.12/page 19
Lymphedema Management Work Book If your leg is at risk or has lymphedema do these also: Leg Flexion Lie on back with both legs straight. Slide one leg up, bending knee, then slide back down. Repeat on the other leg. Leg Falls Bend both knees and keep feet flat on the floor or bed. Keep one leg in place and slowly lower you other leg out to the side. Bring back to center. Repeat on the other leg. Leg Slides Lie on back with legs straight. Slide you leg out to t the side and return it to the center. Keep your knees straight, kneecaps facing the ceiling. Repeat on the other leg. Version 5.12/page 20
Lymphedema Management Work Book Ankle Ankle Pumps Move your foot up and down as if pushing a gas pedal in a car. Repeat on other foot. Ankle Alphabets Pretend to write as if your big toe had a pen. Finish with abdominal breathing. Then rest lying down and elevate your leg on a pillow for a few minutes. Version 5.12/page 21
Lymphedema Management Work Book Who should I see if I notice swelling changes? See your physician and obtain a prescription to see a lymphedema therapist who can assess your swelling. Find a qualified lymphedema therapist in your area: “CLT” after the therapist’s name indicates that the therapist has attended at least 135 hours of post graduate courses in lymphedema care. “LANA” after the therapist’s name indicates passing a national certification exam. www.lymphnotes.com www.lymphnet.org www.clt-­‐lana.org www.bcresourcedirectory.org What can I expect for treatment of a swelling disorder? You may only need a few visits to a therapist if your swelling is minimal. However, if your swelling has progressed or there are skin changes, your therapist may recommend Complete Decongestive Therapy (CDT). Complete Decongestive Therapy is a multi-­‐component approach designed to effectively treat lymphedema and related swelling conditions. There are two phases of treatment, the intensive phase and the self-­‐management phase. It is your responsibility to check with your insurance company to see what expenses are covered before beginning this treatment sequence. 1. Evaluation: A one-­‐hour session in which the lymphedema therapist will ask questions about your medical history and swelling problems. Measurements and photos will be taken of the swollen and uninvolved limb for baseline comparison throughout treatment. Examination of your skin, scars, posture and mobility (how you get around), range of motion of your joints and strength of your muscles will be performed. Following your evaluation, the therapist will discuss your situation with you and outline a plan of care. If compression wraps are recommended, the therapist will give you information on how to obtain these before starting treatment. 2. Education: Treatment may begin with 2-­‐3 visits to instruct you and a family member/caregiver (if necessary) in a home program of Manual Lymphatic Drainage (MLD specialized massage) and bandaging (if necessary), exercises, and skin care. Throughout the treatment program the therapist will teach you information about swelling disorders and strategies you will use to manage independently. You must bring compression wraps and all supplies to these sessions. Version 5.12/page 22
Lymphedema Management Work Book 3. Treatment: Phase 1: The Intensive Phase a. Once you are able to independently demonstrate your home program of MLD and bandaging, clinical MLD will be started. You will be expected to undergo 1 to 1 ½ hour treatments for 4-­‐5 times a week for several weeks in a row. The goals during this phase are to reduce swelling in the affected area with manual lymphatic drainage and to prevent the re-­‐accumulation of lymphatic fluid by the application of special short stretch compression wraps. The compression wraps remain on your limb for 23 hours per day and are removed only prior to your therapy visit. Typical clothing can be hard to fit during this time as the compression wraps are large. We recommend the following: For Arms: Very loose fitting tank tops or T-­‐shirts, arm girth will increase by 3-­‐5 inches in wraps. You may also want to purchase a box of disposable gloves to cover your hand as fingers will be in wraps and it is difficult to keep them sanitary. For Legs: Large, loose fitting sweatpants, workout pants, a skirt, or shorts, for leg girth will increase by 6-­‐10 inches in wraps. You will need to obtain a post-­‐operative shoe, or cast shoe to wear on your involved foot or feet. These can be purchased at Medical Supply stores. Bathing is another issue during the intensive phase. You may choose to sponge bathe while you are undergoing your treatments. Should you choose to shower, you will need to cover your compression wraps with a plastic bag. Plastic garbage bags or umbrella cover bags work well. Cast cover bags can be purchased at Medical Supply stores. You can wash your affected limb in the clinic once it is un-­‐wrapped by your therapist. Driving is allowed. Working is allowed during treatment, depending on your job. You may want to discuss dress code, the need to stretch, move around, and elevate your limb during the day with your supervisor before starting treatment. The duration of treatments will depend upon how much swelling and fibrosis (hardness) is present. For an arm, with minimal swelling that does not have thickening, Phase 1 typically lasts 1-­‐2 weeks. With increased swelling or significant fibrosis, Phase 1 lasts 3-­‐4 weeks. If both legs are involved, treatment for one leg can be completed first and then the second leg can be treated, or they can be treated at the same time, shortening the overall length of treatment if this is reasonable physically for your condition and lifestyle. Version 5.12/page 23
Lymphedema Management Work Book 4. Treatment: Phase 2 Self-­‐Management: a. The swollen limb is measured weekly during treatment and once the size of the arm or leg stabilizes; measurements are taken for a garment. You will be fitted for a compression garment, but will remain in compression wraps until the garments arrive. Typically, custom garments take 7-­‐10 business days for manufacturing and shipping. It is your responsibility to check with your insurance company to determine if garments/devices are covered. Typically these items are NOT covered by insurance. Prices vary from $75.00 to several hundred dollars depending on your specific needs. These garments need to be replaced every 3-­‐6 months. You may also need nighttime compression garments, which can be ordered, during your fitting for a garment. Prices vary according to the product needed. Your therapist will recommend a garment vendor who will help define costs before ordering. You will continue with tapered treatments as needed for 1-­‐3 times a week for a few weeks to months, depending on your specific needs. You will continue with a home program of self-­‐manual lymphatic drainage, exercise, compression, and skin care until the garment is available. 5. Independent Management Program-­‐Life long Management: a. It is essential that you perform all home program components and wear the prescribed garments every day after completing the “Intensive”. You will continue self-­‐MLD and perform your exercises. You will learn to recognize early warning signs for infection and worsening of the swelling and will understand actions necessary to control/prevent these occurrences. Compression garments should be reordered when they are no longer providing adequate compression such as an increase or decrease in girth or wearing out over time—garments typically are effective for 3-­‐6 months, depending on wear pattern and activity. Garments should be washed daily, therefore 2 garments are recommended for optimal hygiene purposes and effectiveness. As with any chronic condition, discharge to self-­‐care is expected, with occasional check-­‐ups should problems occur. Version 5.12/page 24
Lymphedema Management Work Book Compression Wraps Your therapist will give you a list of necessary supplies before beginning your treatments. Most insurance companies do not cover compression wraps. Some insurance companies will pay for compression wraps with this company: www.SunMedMedical.com 1-­‐800-­‐714-­‐7434 If denied, you can appeal and provide a copy of the NC mandate along with a brief explanation of what the supplies are used for in the treatment of Lymphedema. You can access the NC Mandate here: http://www.ncleg.net/Sessions/2009/Bills/House/PDF/H535v4.pdf) Coding for the compression wraps is as follows: S8429 GRADIENT PRESSURE EXTERIOR WRAP S8430 PADDING FOR COMPRESSION BANDAGE,ROLL S8431 COMPRESSION BANDAGE, ROLL Where do I get compression wraps? Academy of Lymphatic Studies 11632 High Street Suite A Sebastian, FL 32958 1-­‐800-­‐863-­‐5935 www.ACOLS.com 1. Compression wraps: Quantity Description ______ Single Arm Kit ______ Single Leg Kit ______ Double Arm Kit ______ Double Leg Kit 2. Additional Supplies ______ Rosidal K 6cm x 5m short stretch ______ Rosidal K 8cm x 5m short stretch ______ Rosidal K 10cm x 5m short stretch ______ Rosidal K 12cm x 5m short stretch ______ TG Size K1 15.5cm x 10m stockinette ______ TG Size K2 21cm x 10m stockinette ______ Komprex sm kidney 9cm x 5cm x 1cm ______ Komprex II 65cm x 65 cm sheet ______ Cellona 10cm x 3.7m roll ______ Cellona 15cm x 3.7m roll ______ Masking tape Version 5.12/page 25
Lymphedema Management Work Book Bandages Plus 1-­‐800-­‐770-­‐1032 www.bandagesplus.com Finger & Toe Bandages SKU# Size 81102 Toe Band 2cm x 3.5m 81103 Finger Band 3cm x 3.5m KT Gloves -­‐ DARTED SKU# Size RIGHT SHORT: Finger length: LONG/SHORT LEFT LONG: Wrist Length: LONG/SHORT SIZE Rosidal Soft Foam Rolls SKU# Size 23110 10cm x 0.3cm x 2.5m 23111 10cm x 0.4cm x 2.5m 23112 12cm x 0.4cm x 2.5m 23113 15cm x 0.4cm x 2.5m Artiflex Padding SKU# Size 9046 10cm x 3m 9047 15cm x 3m Comprilan Short Stretch Bandages SKU# Size 1024 4cm x 5m 1026 6cm x 5m 1027 8cm x 5m 1028 10cm x 5m 1029 12cm x 5m 1030 10cm x 10m Quantity Quantity Quantity Quantity Quantity Version 5.12/page 26
Lymphedema Management Work Book KT KomprimED (2-­‐way stretch) Bandages SKU# Size 55404 4cm x 5m 55406 6cm x 5m 55408 8cm x 5m 55410 10cm x 5m 55412 12cm x 5m 55416 16cm x 5m 55420 20cm x 5m Dauerbinde K (long stretch) Bandages SKU# Size 22000 6cm x 7m 22001 8cm x 7m 22002 10cm x 7m 22003 12cm x 7m 22004 20cm x 7m Kinesiotape: Kinesio Tex Gold SKU# Color KTG15024 BEIGE 2" x 5.5yds KTG25024 BLUE 2" x 5.5yds KTG35024 PINK 2" x 5.5yds KTG45024 BLACK 2" x 5.5yds Easy-­‐Slide Donning Aids SKU# Description 110709 Arm (red) 110705 Open Toe SM 110706 Open Toe MED 110707 Open Toe LG 110708 Open Toe XLG 110716 Closed Toe SM 110717 Closed Toe MED 110718 Closed Toe LG Quantity Quantity Quantity Quantity Version 5.12/page 27
Lymphedema Management Work Book Garments Reminder: During the intensive phase you are wearing compression wraps on a daily basis. At the end of the intensive phase your therapist will discuss recommended garments and arrange a fitting with a garment vendor. The garment vendor will assist you with billing and any insurance benefits. Local Vendors: Advanced Homecare 105 W. NC Hwy. 54, Ste. 267 Durham, NC 27713 (919) 544-­‐0120, FAX (919) 806-­‐3397. Alexander Health Services 500 East Wait Avenue, Suite One Wake Forest, NC 27587 (919) 556-­‐8934, toll free: 1-­‐800-­‐606-­‐7655, FAX (919) 556-­‐0693 Elastic Therapy, Inc: www.elastictherapy.com; phone: (336)-­‐633-­‐3117 Discount “over the counter” compression garment outlet store, Asheboro Version 5.12/page 28
Lymphedema Management Work Book How do I know that my garments fit correctly? All compression garments should be comfortable to wear and should not cause increased swelling, blisters, or redness. They should be cleaned according to manufacturer directions for proper fit, hygiene, and to ensure they last as long as possible. The fabric is woven in straight lines. After application, all the rows and seams should run up the extremity vertically. If this is not the case it is best to use rubber gloves to smooth and straighten the fabric so that the lines travel straight up the extremity. Sleeves: Sleeves should extend from just above the wrist bone to about ½ inch to 1 inch below the armpit. It should not roll down. (see adhesive lotion below). It should not slide down the arm or bunch at the elbow. (may be too long) It should not cause the hand to swell. (may be too tight or too long) Gloves: Fingertips of the glove typically come to the base of each nail and the wrist portion should extend above the bony portion of the wrist. Gloves are worn on top of the sleeve. There should be no gap between the sleeve and glove. Gloves should not cause the hand to swell. Stockings: Stockings should not bunch or cut at the ankles or behind the knees, nor should they roll down or slide down the leg. (may be too long or overstretched) To correct this, the fabric simply needs to be worked down the calf and distributed evenly. Open toes should begin just below the toes and should not put any pressure on the foot bones. Toe Caps: Toe caps can be worn on top or below the open toe garment. The smallest toe may not need compression. It should not cause increased swelling in the toes or foot. Bras: Go to a qualified fitter for measuring. A loss or gain of 10 pounds can change your bra size. Bras should not cutoff under the armpit or at the ribs, nor cut in at the shoulders. Bras should come up as high as possible under the armpit for support in that area. What can help me with getting my garments on and off? The Use of Adhesive Lotion The use of a water soluble adhesive lotion can solve rolling or slipping of garments. To apply adhesive lotion, put the garment on and assure the proper fit of it, turn the border over and apply the roll on applicator to the skin just above the edge of the garment, allowing several minutes for the lotion to become tacky, then turn the garment border back over and adhere. Version 5.12/page 29
Lymphedema Management Work Book The Use of Rubber Gloves Wearing household rubber gloves or gardening gloves makes the application of a compression garment much easier. They allow you to smooth out the fabric with minimal effort and grip the material firmly while pulling. They also protect the fabric from runs and pulls caused by fingernails or jewelry. The Use of Slip On Aids Various aids are available to assist with putting on and taking off garments. Your therapist will recommend one if needed. Version 5.12/page 30
Lymphedema Management Work Book How do I monitor swelling changes in my limb? You can keep track by taking measurements periodically and comparing side to side. (See next page) You can also look for an indentation that stays in your skin when you press into it. What should I do first if I notice swelling changes? Here are some strategies for you to try first to help you manage a sudden increase in swelling. Seek medical attention immediately for these: ___Do I have an infection? These would include redness, itching, blisters, a fever, fungus, etc. If you suspect that you have an infection, contact your doctor for antibiotics. Remove all compression and do not perform MLD for at least 72 hours after you have started the antibiotics and the skin condition is more normal. ___Do I have shortness of breath or pain that is not usual for me? Contact your doctor, as this may be a blot clot. Remove all compression and do not perform MLD until your doctor tells you it is ok to put the compression back on. Troubleshooting Strategies: ___ Am I wearing my compression appropriately? Daytime compression during the day, night time garments during sleeping. ___Has my affected area been stressed with an injury, bug bite, etc? See skin care instructions. ___ Are my garments still working correctly? Garments need replacements every 3-­‐6 months because they become stretched out. ___ Have I tried wrapping the involved limb for 3-­‐5 days in a row (24 hours a day)? ___ Have I increased my self-­‐ MLD to 3-­‐4 times a day? ___ Am I doing all my exercises? ___ Am I eating a healthy, low-­‐salt, low–fat diet, and drinking 48 ounces of water? Have I gained weight? ___ Have I changed or added a new medication (ask your pharmacist if they cause swelling or inflammation)? ___Is it hot outside? Summer time heat increases swelling so stay cool and drink plenty of liquids. ___ Am I resting adequately and elevating the limb whenever possible? If you have tried the strategies above and are still having problems, contact your therapist. Version 5.12/page 31
Lymphedema Management Work Book Self-­‐ Measuring Version 5.12/page 32
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Lymphedema Management Work Book Lymphedema Resources UNC Healthcare Comprehensive Cancer Support Program Lymphedema evaluation and treatment services Carolina Pointe II 6011 Fearrington Rd, Ste 304 Chapel Hill, NC 27517 CPII clinic 919-­‐957-­‐6600 New appointments must call UNC Department of Occupational and Physical Therapy @ 919-­‐
966-­‐2056 NC Cancer Hospital UNC Lineberger Comprehensive Cancer Center Comprehensive Cancer Support Program Provides symptom management, pain control, educational materials and programs, nutritional consults, survivorship programs, massage, yoga, acupuncture, and referrals for additional support services to support you through your cancer journey http://cancer.med.unc.edu/ccsp Get Real and Heal: A program for breast cancer patients that strengthens your body and mind by integrating individualized prescriptive exercise with recreational therapy. http://www.unc.edu/depts/recreate/index.html Lymphedema Websites National Lymphedema Network (NLN): Lists support groups, therapists and treatment centers, funding for garments. http://www.lymphnet.org/ Lymphatic Research Foundation: Information on clinical trials and fundraising for research. http://www.lymphaticresearch.org/ Lymph Notes: Extensive site providing lymphedema education and online forums http://www.lymphnotes.com/ Lymphedema People: A site for people with lymphedema by people with lymphedema. http://www.lymphedemapeople.com/ Circle of Hope Lymphedema Foundation: http://www.lymphedemacircleofhope.org/ Version 5.12/page 34
Lymphedema Management Work Book Lighthouse Lymphedema Network: http://www.lymphedemalighthouse.org/ Lymphedema Awareness Foundation: http://www.elymphnotes.org/ Lymphology Association of North America (LANA): Includes list of certified lymphedema therapists. http://www.clt-­‐lana.org/ Excellent YouTube video about lymphedema http://www.youtube.com/watch?v=-­‐6WBF4FN98s&feature=player_embedded Children with Lymphedema: Online support group for parents, families and caregivers of children with lymphedema http://health.groups.yahoo.com/group/childrenwithlymphedema/ Cancercare.org Breast Cancer Related Lymphedema Websites Living Beyond Breast Cancer’s Guide to Understanding Lymphedema http://www.lbbc.org/LBBC-­‐Library?SearchText=lymphedema Breast Cancer Resource Directory: http://bcresourcedirectory.org/ Información Para Las Mujeres Latinas: http://bcresourcedirectory.org/directory/05-­‐
hispanic_american.htm New Life After Cancer: Promoting survivorship after breast cancer. www.newlifeaftercancer.org Breastcancer.org Sisters Network, Inc: national and NC chapter programs providing support for African-­‐
American women. Sistersnetworkinc.org Susan G. Komen NC Triangle Affiliate: http://www.komennctriangle.org/ Fleet Feet Sports, Carrboro, NC: local resource for mastectomy sports bras and athletic shoes. http://www.fleetfeetcarrboro.com/ Finding Financial Help for Lymphedema UNC Healthcare: Financial counselor 966-­‐6213 Charity Care: 966-­‐3425 Version 5.12/page 35
Lymphedema Management Work Book Lymphedema Treatment Act: This bill, sponsored by Congressman Larry Kissell of North Carolina, would offer coverage for Medicare beneficiaries with lymphedema from any cause. http://lymphedematreatmentact.org/ National Lymphedema Network Marylyn Westbrook Garment Fund: pays for one set of garments per applicant per calendar year; must be NLN member receiving treatment at a clinic or with a therapist affiliated with NLN; must show demonstrated financial need. Call 800-­‐541-­‐3259 or go to lymphnet.org/patients/westbrookFund.htm Cancer Related Lymphedema CancerCare Sponsors limited financial assistance for cancer patients. Funds are for home care, child care, and transportation, pain medications, chemotherapy, radiation and lymphedema services. There are income guidelines. 800.813.HOPE (4673) http://www.cancercare.org Breast Cancer Related Lymphedema Hazlo Por Tu Familia: Chatham Hospital, Siler City, NC. 919.663.2005 Offers Latinas breast health education, breast exams, case management and after-­‐care lymphedema therapy. (2006 Komen NC Triangle Affiliate Grantee) Women Helping Women (Raleigh, NC): 919.846.1203. http://www.whwnc.org Nonprofit organization assists low-­‐income, uninsured, or underinsured women financially with purchase of prostheses, wigs, hats and turbans, and with emergency medical funds. Provides information about follow-­‐up care and resources available. Currently services the Triangle area and other North Carolina counties where possible. Web resources offering non-­‐medical compression wear: Contourmd http://www.contourmd.com Just My Size Decent Exposures http://www.decentexposures.com/lycraleg.shtml Junonia http://www.junonia.com/home.htm Silhouettes http://www.silhouettes.com/?cm_re=hp-­‐_-­‐g-­‐_-­‐brandname Spanx BodyShapers http://www.spanx.com Aerotech Designs http://www.aerotechdesigns.com Version 5.12/page 36
Lymphedema Management Work Book Reference List: American Cancer Society (2006). Lymphedema: Understanding and Managing Lympedema After Cancer Treatment. Atlanta: American Cancer Society.
Burt, J, White, G. (2005). Lymphedema: A Breast Cancer Patient’s Guide to Prevention and Healing. Hunter House. Chikly, B. (2002) Silent Waves: Theory And Practice Of Lymph Drainage Therapy. Scottsdale, AZ: I.H.H. Publishing. Ehrilich, A., McMahon, E., Burns, C. (2007). Voices of Lymphedema: stories, advice, and inspiration from patients and therapists. LymphNotes. http://www.lymphnotes.com/ Foldi, M. & Foldi, E. (2003) Textbook Of Lymphology For Physicians And Lymphedema Therapists. Munich Germany: Urban & Fischer. Kasseroller, R. (1998) Compendium Of Dr. Vodder’s Manual Lymph Drainage. Heidelberg, Germany: Haug. Lovejoy-­‐Evans, L. (2008) Advanced Clinical Skills For The Management Of Lymphedema. North American Seminars, Inc. Lawenda, BD, Mondry, TE, Johnstone, PA (2009). Lymphedema: a primer on the identification and management of a chronic condition in oncologic treatment. CA Cancer J Clin. 59(1):8-­‐24. Lymphoedema Framework. (2006) Best Practice for the Management of Lymphoedema. International consensus. London: MEP Ltd. http://www.woundsinternational.com/pdf/content_175.pdf McMahon, E. (2005) Overcoming the Emotional Challenges of Lymphedema. LymphNotes. http://www.lymphnotes.com/ National Lymphedema Network Medical Advisory Committee. Air Travel. Position Statement of the National Lymphedema Network. May 2011 National Lymphedema Network Medical Advisory Committee. Exercise. Position Statement of the National Lymphedema Network. May 2011 Poage, E., Singer, M., Armer, J., Poundall, M, Shellabarger, M. (2008). Demystifying
Lymphedema: Development of the Lymphedema Putting Evidence Into Practice® Card. Clin J
Onc Nsg 12(6): 951-964. http://www.ons.org/Research/PEP/Lymphedema
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Lymphedema Management Work Book Ridner, SH, Bonner, CM, Deng, J., Sinclair, VG. (2012). Voices from the shadows: living with lymphedema. Cancer Nurs. 2012 Jan; 35(1):E18-­‐26 Schmitz, K., Ahmed, R., Troxel, A, et. Al. (2009). Weight Lifting in Women with Breast-­‐
Cancer–Related Lymphedema. N Engl J Med 2009; 361:664-­‐673 Zuther, J. (2005) Lymphedema Management: The Comprehensive Guide For Practitioners . New York, NY: Thieme Medical Publishers Version 5.12/page 38
Lymphedema Management Work Book About the authors Valerie W. Collins, PT, CLT-­‐LANA graduated from University of Connecticut with a BS In physical therapy. Her main field of focus was orthopedic and geriatric patients. She began lymphedema training in 2006 after being diagnosed with lymphedema. She is a Certified Lymphedema Therapist (Academy of Lymphatic Studies) and has National certification from the Lymphology Association of North America (LANA). Valerie is married with two college kids, and loves to garden, hike, cook, paint, and read. Theresa Gilliam, MS, OTR/L, ATP, CLT-­‐LANA is a native Tar Heel and graduated from Shenandoah University in Winchester, Virginia with Masters of Science in Occupational Therapy. She obtained specialized lymphedema certification (Certified Lymphedema Therapist -­‐
CLT) from Academy of Lymphatic Studies in 2005 and is certified by the Lymphology Association of North America (LANA). Theresa has extensive experience in the field of Assistive Technology and is credentialed by the Rehabilitation Engineering & Assistive Technology Society of North America, (RESNA-­‐2003) as an Assistive Technology Practitioner. Before becoming an occupational therapist, Theresa worked as a full-­‐
time production potter. She's currently in the process of setting up a new studio and can’t wait to get her hands back in the mud. Theresa is also crazy about dogs and is especially proud of her Welsh springer spaniel, Nettie, who is a Delta Society Certified Therapy Dog! We dedicate this booklet to Deborah K Mayer PhD, RN, AOCN, FAAN whose support and
advice was invaluable in the production of this booklet. We would like to thank Lee Smith, MA,
MSIS. Visual Arts Specialist, for her assistance in the production of this booklet.
We hope this booklet helps you to understand that lymphedema can be successfully managed. You can lead an active healthy life doing what you enjoy. Version 5.12/page 39