Customer Reviews

Living Well with Lymphedema

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THE AUTHORS:
Ann Ehrlich: professional medical writer with Lymphedema following breast cancer treatment.
Alma Vinje-Harrewijn: licensed physiotherapist with more than 15 years of experience and postgraduate training in MLD per Vodder, Foldi, Chikley...
Elizabeth McMahon, PhD: clinical psychologist with over 25 years helping persons with chronic medical conditions manage anxiety, depression and other emotional issues.

WHY READ THE BOOK? The self-care knowledge and techniques presented can thwart a host of illnesses in addition to Lymphedema. Also see www.lymphnet.org

EDEMA: the body's normal swelling response to an injury.

LYMPHEDEMA: abnormal swelling due to damage or improper development of the lymphatic system, which, left untreated, can become worse, dangerous or life-threatening. Primary Lymphedema is hereditary; secondary Lymphedema results from damage to lymphatic system. Treatment is the same. Onset may be immediate or delayed for years. Approximately 5 million Americans affected.

RISK FACTORS, SECONDARY LYMPHEDEMA: biopsies; burns; scars; obesity; circulatory malfunctions; fractures; joint dislocations; other injuries; paralysis; multiple sclerosis; inactivity. Cancer treatments lead in developing nations.

EARLY SYMPTOMS: infection; swelling; pitting edema; "pins & needles;" heaviness; tight skin, ring, bracelet, shoe or sleeve; shoulder/hip aching; decreased joint mobility...

STAGE1: Swollen tissues are soft, and pitting edema is present. Elevation relieves temporarily. Early treatment can improve it greatly.

STAGE2: Tissues feel firm, even hard, and pressure leaves only a slight indentation. There may be more swelling, fibrosis, infections and skin problems. Intense treatment may improve.

STAGE3: Swelling and tissue fibrosis cause the skin to harden. Folds of tissue disfigure and limit mobility. Fungal infections and open wounds develop. Intense therapy improves it or prevents worsening. Reversal is rare.

FIBROSIS: an inflammatory reaction to stagnant, protein-rich lymph, which further slows the lymph circulation, which traps more stagnant lymph and causes additional swelling. Infection risk increases.

DIAGNOSIS: 90% based on symptoms and family history. 10% require more sophisticated testing and questioning. Any heart condition will be diagnosed and treated first. Sudden swelling - could be thrombosis; slow progressive swelling of legs - could be chronic venous insufficiency; Rapidly-progressive and painful Lymphedema-type swelling - could be a fast-growing tumor. Check practitioner's credentials.

COMBINATIONS: explanation of Lymphedema interactions with obesity; lipedema; congestive heart failure; chronic venous insufficiency; dependent edema; cellulitis; diabetes; peripheral neuropathy.

SELF-PROTECTION: For the affected or at risk limb, avoid: injections, blood draws, finger pricks, IV placements, acupuncture, burns, injuries, tattoo parlors, excess weight, flying or exercising without compression garment.

TREATMENT-MLD: Manual lymph drainage moves lymph away from the affected area. Contraindicated if cellulitis, fever, infection, developing infection, uncontrolled major illnesses. More often contraindicated for the elderly due to co-occurring illnesses.

TREATMENT-COMPRESSION, FUNCTIONS: Bandages and garments maintain progress; prevent additional swelling; support natural lymph drainage; help muscles pump lymph; soften fibrotic (hardened) tissues. Remove for sleeping.

TREATMENT-PUMP: In the early 1990's Complete Decongestive Therapy (MLD+compression+self-management) was found more effective than the pump, which can increase fibrosis and displace the swelling of the limb into the trunk or genitalia. However, the (newer generation) pump can be used successfully: if therapist sees and evaluates the patient first; if MLD has already been performed on the neck, the abdomen and the uninvolved leg/arm; if there is careful monitoring for progress, fibrosis or increased swelling in surrounding tissues.

POSSIBLE CONSEQUENCES OF NEGLECT: cellulitis, erysipelas, athlete's foot, toenail fungus, orthopedic problems, fibrosis, hyperkeratosis, papillomatosis, weeping Lymphedema, lymphangitis,
lymphangiosarcomalJ(rare)

LYMPHEDEMA THERAPIST CERTIFICATION: Lymphology Assn of North America (LANA) requires 135 hours of specialized education... Prerequisite is a professional license in physical therapy or related profession.

RESOURCES: www lymphnotes.com lists treatment facilities and support groups and other resources, and provides a network. Also contact cancer support groups.

INSURANCE: Excellent chapter on Insurance; Family and Medical Leave Act; Women's Health and Cancer Rights Act of 1998.

EMOTIONS: Handling emotional challenges affects your self-management competence. Dr. McMahon's, Overcoming the Emotional Challenges of Lymphedema, is recommended. Practice relaxation; take action on problems without waiting to feel better; confine worrying to a scheduled time; talk to yourself with respect; get professionals to answer all of your questions.

SELF-MASSAGE: coordinate w/Dr. and Lymphedema therapist; does not replace MLD by trained Lymphedema therapist; technique and sequence are explained and illustrated, but you must be trained; Self-massage not recommended if...certain malignant tumors, leukemia, acute inflammation, infections, tuberculosis, toxoplasmosis, acute allergic reactions, erysipelas, thrombosis, precancerous skin conditions, chronic inflammation, thyroid disorders, bronchial asthma, dysautonomia, granulomas, or occlusive artery disease.

SELF-BANDAGING: Get instructions. Eight pages on technique, safety, materials and effectiveness. Contraindications: infection; open wounds; congestive heart failure; other.

EXERCISE: Illustrations. Precautions. Coordinate with Lymphedema specialist; Wear compression; Exercise increases lymph flow rate 15 times and combats depression & fatigue; Deep breathing moves lymph through abdomen; goal to enjoy 1-hour hike 3 times/week.

AQUATIC THERAPY: The buoyancy enables relaxation, pain decrease, additional motions, reduced joint stress, and cardiovascular system strengthening. Many precautions, guidelines.

NUTRITION: Good nutrition is essential to managing Lymphedema's stress on the body. Obesity is risky. Consume adequate protein. Stay well-hydrated.

HEALTH JOURNAL: calendar, visit records, current medications, healthcare team roster, medical history, Lymphedema records, compression garment records, hospitalization records. Helps with informing doctor and with insurance claims.

HAVING FUN: laughing; tennis; basketball; golf; bowling; travel; saunas & steam rooms (avoid); hiking; backpacking; trampolining; dancing; yoga. Limitations and safe participation are explained.

UNDERSTANDING THE LYMPHATIC SYSTEM: 22 pages of outstanding explanation and illustration. This material can improve one's self-care via own-body respect.

SUGGESTION 1: Dual-Purpose Cancer Prevention: Pre-knowledge of the Lymphedema side-effect from cancer sagas would have made more of the recipients of biopsy, surgery, radiation and chemotherapy proactive on prevention. Numerous books teach cancer prevention, and Mary Kerney Levenstein's Everyday Cancer Risks and How to Avoid Them aptly and comprehensively does this. (Enter "Mary Kerney" or "0895295059" for a quick find on Amazon.com.) Also see Singer and Grismaijer's, Dressed to Kill: The Link Between Breast Cancer and Bras, wherein lymph flow restriction is deemed culpable.

SUGGESTION 2: Read, Coping With Lymphedema by Swirsky and Nannery, 1998 - also excellent but significantly different.

SUGGESTION 3: I suggest writing booknotes (mine~5000words) for understanding, reference and retention.

This handbook is a much needed addition for those suffering from lymphedema and their caregivers, family and friends. There is very good practical information here, clearly researched and clearly presented.

Section II, 'Understanding Lymphedema', tells you everything your doctor forgot to mention, including the parts you didn't hear or understand. Section III 'Self-Management of Lymphedema' is essential for healthy living for those with lymphedema and caregivers, family and friends. Section IV 'Understanding the Lymphatic System' explains the science and physiology of lymphedema in easily understood terminology.

This book is an excellent reference and handbook. It is essential reading for healthy living with lymphedema.

I've had lymphedema since 2001 as the result of breast cancer treatment and now I help run a support group for lymphedema patients. "Living Well With Lymphedema" is the best book out there for patients and is the most up-to-date book of its kind right now.

We recommend it to all the members of our lymphedema support group. Our organization has bought additional copies to distribute to libraries in our area so anyone who needs it will have free access to it.

This book is a straight forward, readable instruction book for the lymphedema patient. The medical information is
thorough and current. The authors have done an incredible job surveying the patient population for suggestions and practices that work. Plus there is information on the emotional aspects that patients have to contend with and coping recommendations.

With this book, living well with lymphedema is what it's all about and definitely an attainable goal for most patients. What a positive message!

Highly recommended.

This book has helped me in so many ways. I agree with Tami and Nancys comments, TOTALLY!!

I actually gave my book away to a Massage Therapist. I am purchasing a second one so I can go back to it over and over again. This book has given me more information than any Dr. has even tried to do. I have been battling LE in my left leg for 33 years and just found out there is help out there.

Great source of information!!

With this book as a recent purchase I would have to say its one of the best. I diagnosed with LE in the right leg 6 months ago have been trying to find all kinds of info on it to help me understand it more. Also it has helped my family understand what I and the rest of us have to endure. It still makes me mad that we live in a time where Doctors are either not willing to diagnose our conditios correctly or they have no clue about the condition.

This is a wonderful book for anyone with lymphedema or a caregiver. The book covers all aspects of lymphedema and I especially like the chapters on how to manually drain the lymphatic nodes to help reduce the swelling of the affected limb. This is a must have book.

As a certified lymphatic therapist, I was extremely impressed with this book. I highly recommend to patients first diagnosed with lymphedema, as well as to therapists. The most important step when first diagnosed is to understand what lymphedema is, how to prevent making it worse, and what will actually make it better. It is well written, professional, but easy to understand. Accurate information, excellent tips, including a chapter on insurance and how to write a letter of appeal. This is the first book I recommend to my patients.

When I was first diagnosed, I immediately bought this book.
After scouring through the pages, I just felt overwhelmed, depressed and really despondant.
It proved to be somewhat informative (which can also be achieved on-line), but extremely depressing as most "stories" were about the down-sides of this disease and not really concluded in any way.
Yes, LE is not curable and there ARE downsides, but my success with my treatments have led me to a very positive place in the management of my care.
I have not picked up this book since the last day that I read it other than to look at the diagrams of the lymphatic system.

It had very little new info in it--You can get as much on the websites--well written, but not worth it.

Lymphedema is something that crept up on me unawares, after many tests my vascular doctor diagnosed me with primary lymphedema. I got some PT, which consisted of being pumped by a Compression Pump, once, a foot massage, and help in garment fitting. I think the most important thing is the garment, Though the mayo clinic, is saying that using Horse chestnuts is as good as wearing compression hose, which I have been doing for a good while.
Got to check into those horse chestnuts!!! It took me awhile to find a comfortable set of comp stockings, but I think that they are helpful, as also keeping your body clean, My leg measurements are down an inch since I started wearing them.
Bad things about lymphedema, weight gain, pain and itching in your legs. Gotta moisturize that skin!!!!! Eucerin Calming cream is da best. This book, I read too late, I had heard all of this before, at a website called Lymph-notes, ran by Ann, one of the authors. The book says that you should not use compression pumps for lymphedema. I can see why, my pump has moved the Lymph fluid up into my groin and abdomen.
There is no cure for Primary or secondary lymphedema. This book gives some symplistic info about Lymphedema, but I was disappointed, I had read most of it on her website.