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Jan - March 2014: Self-Management and Psychosocial Issues

By:  Julia Rodrick, OTR, CLT-LANA, WCC 
St. John’s Hospital, Rehab. South Out-Patient Services, Springfield, IL

Q: was diagnosed with lymphedema after the birth of my second child, who is now 20 years old. have received the manual lymphatic drainage (MLD) treatments and wear my compression stockings daily. also wrap at night most of the time. My doctor says to keep doing what I’m doing. Although I’m managing, have to admit that I’m discouraged. Can you offer any encouraging news out there?

A: Your answer is “YES.” As with most chronic conditions, advances in treatment are connected to research and funding. Let me encourage you by sharing that the need to improve quality treatment and management for lymphedema has not gone unnoticed. There is an expectation that medical professionals who treat lymphedema are those who have achieved advanced skills training, as outlined by organizations like the Lymphology Association of North American (LANA; www.clt-lana.org). 

In recent years, the development of best practices for the treatment of lymphedema has gone global! An example is The International Lymphedema Framework (ILF) projects, which represent a partnership among countries that are redefining the standards of care for lymphedema.1 One intention of this movement is to communicate to medical professionals, worldwide, that there is a consensus of “best practice” care for lymphedema types. This international consensus is based on research that has explored advances for less invasive surgical procedures to reduce the risk 
of lymphedema. It has supported the development of newer technologies that have aided in the development of more effective types of compression based on the patient’s need, comfort, and lifestyle (including night-time garments as an alternative to wrapping). Through advanced studies of lymphatic dynamics, the industry of compression is also designing more effective devices that use less pressure intensity and apply MLD-like mobilization of the affected tissues.1 These devices are replacing the pneumatic pumps of the 1990s as an alternative for those who are not able to perform self-directed home programs in the attempt to manage their condition. 

The American Lymphedema Framework Project (ALFP.org) was established in 2008 as a national initiative to join with healthcare providers, researchers, industry stakeholders, educators, and patients to examine standards of practice, health policies, education, and research to “impact and advance the quality of lymphedema care in the United States” (http://alfp.org). This organization has collaborated with the American Cancer Society (ACS; www.cancer.org), the National Lymphedema Network (NLN; www.lymphnet.org), and LANA on behalf of all those who suffer from lymphedema in the U.S. in an effort to strengthen awareness and educate.

I would like to invite you to visit these organizations’ websites to acquaint yourself with the strides being made in the effort to support those struggling with lymphedema management. I hope you will realize you are not alone and will be encouraged.

Q: would like to try to stay actively involved in some kind of exercise to help to control my lymphedema, but have bad knees. What would be the best type of exercise?

A: Designing the best maintenance exercise program, beyond the remedial type used during the Phase 1 lymphedema interventions of Complete Decongestive Therapies (CDT), involves a few considerations. Any exercise program must be safe for you. Guidance from your doctor will be important because knowledge of your general health will impact your ability to participate in any exercise program you choose. Any pre-existing medical conditions that may affect your cardiac performance, your muscle or joint integrity, or general metabolism (eg, blood sugars associated with diabetes) will influence your choices and exercise design. Although current research is predominantly focused on the influence of exercise on breast cancer-related lymphedema, the position of the past, which embraced the thought that exercise would increase the symptoms of lymphedema, is no longer the consensus among health care professionals. Following the initial tissue trauma or triggering event, no strenuous exercise is recommended; however, after recovery, low-impact, gradual strengthening and endurance exercises are generally good choices for your first weeks.2 The exercise program you choose should be enjoyable. 

One form of exercise being explored as an alternative to traditional exercise routines associated with Phase 2 lymphedema management—and which may prevent additional knee pain—is exercise in the water, termed Aqua-Lymphatic Therapy (ALT). The properties of the aquatic environment include buoyancy, hydrostatic pressure, and viscosity. These properties offer gravity-free offloading to the submerged body part, which reduces direct force.2 Studies exploring ALT as an alternative exercise for compliance and limb volume control among breast cancer-related lymphedema patients revealed a significant positive and immediate effect on limb volume, compliance, and quality of life.2,3 If you are comfortable in the water, this may be a solution for you. The NLN’s Position Paper on exercise may serve as an informative resource guide for you (lymphnet.org/pdfDocs/nlnexercise.pdf). 

Q: When was first diagnosed with lymphedema decided would handle it the same way handled the news that had breast cancer: it was not going to control me. After enduring weeks of treatment, still face daily routine of trying to manage the swelling. am told will need to wear compression garments for the rest of my life. Coping with this is hard. Any advice?

A: No matter the type, lymphedema can have an incredible impact on your life. So much of your coping depends on recognizing the best strategies you have used to face other overwhelming challenges in your life. What were the first steps that helped you be empowered to stay strong as you strived to regain your focus after the cancer diagnosis? Was it through a process of acknowledging your anger or your fear? Did you seek support through communicating your needs? Maybe you’re a problem solver who can see things clearly once you can discuss your options with someone you respect and trust. Please be active in seeking out whatever will get you to a safe place emotionally, where you can adapt to the realities of living with lymphedema. As you work through this process, test the reliability of the information you gather regarding lymphedema management. If you are using the resources available on the internet, the following information highlights a few considerations which could be helpful in your fact-finding mission to empowerment.5 

    1. Is the site credible? Look for major organizations that demonstrate reliable health information such as the American Cancer Society (www.cancer.org), NLN (www.lymphnet.org), government agencies, universities, or teaching hospitals. Is the information current? How is the information evaluated or reviewed before it is posted? Do the authors of the information presented include their credentials? 
    2. Is the information accurate and based on scientific fact? Are there disclaimers stating that the information is not meant for personal medical advice? Does it contain personal opinion, anecdotal information, or stories instead of scientific evidence and sources? 
    3. What is the purpose of the web site? Is it to sell a product or advertise? Can you get the information you need without submitting personal information? Are there links that direct you to products or services being sold? 

Coping with changes in activities of daily living in order to employ risk reduction strategies can require some creative thinking. Don’t give up what you love. For example, if you like to garden, just try to avoid heavy, repetitive work. Why not pace yourself by planting your garden over a few days? Alternate your body positioning to avoid muscle strain. Understanding your limits, making minor adjustments, and being open to educating yourself and others about how you choose to manage lymphedema are the initial steps to coping and empowerment. 

References

    1. Lymphoedema Framework: Best Practice for the Management of Lymphoedema. International Consensus. London: MEP Ltd, 2006
    2. Tidhar D, Katz-Leurer M. Aqua lymphatic therapy in women who suffer from breast cancer treatment related lymphedema: a randomized controlled study. Support Care Cancer. 2010;18(3):383-392.
    3. Towers A, Letellier ME, Cohen R. Remedial exercises for breast cancer related lymphedema: a randomized controlled pilot study. Journal of Palliative Care. 2008; 24(3):215.
    4. Morgan PA, Franks PJ, Moffatt CJ. Health-related quality of life with lymphoedema: a review of the literature. Int Wound J. 2005;(1):47-62.
    5. American Cancer Society (ACS). Coping with Lymphedema. In: Lymphedema: Understanding and Managing Lymphedema After Cancer Treatment. Atlanta, GA: American Cancer Society; 2006:122-123.

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