Dear friends of the NLN,

We are pleased to present our latest issue of Lymph e-Channel. In this volume of e-Channel, we focus on the important topic of patient education. Like they say, 'knowledge is power' and we firmly believe that having a good grasp of lymphedema education is important to effective care and  risk reduction practices 

The patient-therapist relationship is one that is built on trust and good communication.  Jeannette Zucker, an experienced lymphedema therapist and great contributor to the LE community, suggests many excellent points to consider during the initial clinic visit, and make sure to provide adequate time to listen and educate the patient/and family member. We encourage both therapists and patients, alike, to consider how these points can improve your relationship  from the moment you first meet. Understanding of the lymph system and trust in the therapist is pivotal 

For many, the first appointment at a lymphedema clinic can be stressful, scary, emotional, overwhelming, or in Cynthia Judge's case, hopeful. Before finding support at a local clinic, Cynthia, unaware of  her diagnosis of lymphedema, struggled with her condition - finding herself in life threatening circumstances. She recounts her journey back to a healthy and positive life in her patient perspective.

In related news, the NLN Research Page is now online. This page archives classic and current scientific research related to lymphedema and more. If  you are interested in increasing your scientific knowledge of lymphedema, visit  http://www.lymphnet.org/research.htm  

We are also excited to announce that the Lymphedema Cost Savings and Treatment (HR 2499) was reintroduced to Congress! The bill has also received important endorsements from the American Cancer Society, the American Physical Therapy Association, and the American Occupational Therapy Association. Please educate your House and Senate representatives about important of quality lymphedema care. Visit http://lymphedematreatmentact.org/ to contact your representatives. We will need all of your support to get this bill passed!

We hope you enjoy this issue of e-Channel and don't forget that you can also submit ideas and articles to robin@lymphnet.org.

In good health,

The NLN Staff

One of the most important things that takes place during a patient's initial visit with a lymphedema therapist is patient education. This is usually the time when patients first discover the information that they have so long been searching for. They are so happy to finally understand what is going on with their bodies, why they no longer have their normal profiles or well-shaped limbs. However, they are also usually disappointed at some point during this meeting to hear that the required treatment doesn't have an exact end. That is lymphedema is a condition that requires ongoing management.

When patients learn that lymphedema is a chronic condition, there are so many different thoughts that run through their minds. There are more questions than anything else and the most common reaction I have observed as a therapist is the overall sense of feeling overwhelmed. Patients try to make sense of why it is necessary to make permanent and significant lifestyle changes. What about exercise? Air travel? Massage how often? Compression therapy round-the-clock? Higher risk for infection?  No cure?

Patients need time to digest the information they receive, and how much time depends on various things. One consideration is how much knowledge a patient has prior to the evaluation.  Some patients come to their first appointment with no expectations reporting that their doctor simply ordered the therapy for them. In this case, the shock factor may be profound. Other patients may have already been introduced to the concept of lymphedema therapy from their physician, other healthcare professionals, or patients who share the same experience. It is not uncommon for these patients to arrive hoping that the therapist will tell them that what they heard is "not true". And on the other hand, some patients are quite familiar with what therapy entails and come prepared to at least give lymphedema therapy a chance to prove its worth.

More than anything else, I would say function and how it has been affected by lymphedema determines how patients take in the information regarding the necessary treatment. Many patients actually are not even bothered by how swelling has changed the way they look, except perhaps patients who have head and neck lymphedema. Even then it is function that is of greatest concern. The more that patients feel that function is decreased because of swelling the more prepared patients seem to be to make a change and work towards achieving their prior functional status. Among other things, this includes a demanding program of meticulous skin care, daily manual lymphatic drainage, daily night-time bandaging, daily daytime compression garments, and daily exercise.

Other things that determine how patients absorb the information include the severity of their swelling, how much social support is available, prognosis related to disease (if present), body image and self-esteem, as well as cultural background.  I believe all of the above need to be taken into consideration in order to understand why and how each patient responds the way they do.

Patients should be allowed to express themselves fully, in their unique ways, and without judgment. When it becomes apparent that a patient is angry, it might be best that the session shift from education to establishing an action plan. Patients who appear depressed may be inspired by some passive manual therapy to demonstrate that positive changes are possible even in just a few minutes. Those who are ambitious and eager to take charge will benefit from immediately being provided with tools to manage lymphedema on their own. 

Regardless of what the patients' reactions may be, what therapists need to consider is that how this first meeting unfolds will mold the patients' response to therapy. This will in turn influence compliance and also set the stage for what is probably the longest relationship a patient dealing with lymphedema will have with any healthcare professional. And just like the beginning of any relationship, first impressions are everything.

In order for the relationship to be healthy, the therapist must be flexible and gauge how much information the patient can handle. Therapists need to read the patient, pay attention to not only what is being said but also observe nonverbal communication, and try to gain a true understanding of how the patient is reacting to the information. This is because essentially patients are getting pressure to do things that they are not necessarily prepared to do. 

So by adjusting to match and balance out a patient's particular style, therapists will be able to more successfully encourage patients to accept what is being asked of them. That is patients will be more likely to commit to a new way of living that maximizes function as well as appearances. Ultimately it is about providing truly individualized care, beyond just mechanical aspects of the therapy, so that patients can experience the highest possible quality of life.

medi's New Thorax  

Patient Reviews:

Today is the first day that I've had a chance to wear the mediven thorax garment in an office setting.  Been crankin' away on the computer and dealing with mtgs for 10 hours straight and I have NEVER, EVER felt so good from a lymphedema perspective.  The support is incredible and I swear the compression in the vest is helping make my arm feel good - not spiky or  achy or prickly.  It's like the sleeve and vest are in parity and working  very well together.

I am one happy customer!!!

Cindy D.
Morgantown, WV

Therapist Review:

I am a certified lymphedema therapist at West Virginia University Hospital and I see both outpatients and inpatients at this facility.The hospital has a large cancer center, Mary Babb Randolph Cancer Center, which serves much of West Virginia.There are many people that I treat who are breast cancer survivors and have lymphedema.

Lymphedema can be challenging to manage especially when both the arm and chest are affected.For therapists, it can be difficult to fit patients with garments that are comfortably provide support to both the arm and chest and complement each other well.Therefore I was very pleased when one of my patients was fitted with the Mediven custom compression vest and had such good success with this product.

The Mediven vest is custom made and the fabric is very appropriate for the chest region.  The patient reported that the vest was a good fit and that there were immediate results. This patient is very active with her job, home duties, and leisure activities.We have been searching for a long time to find a product that will manage both her chest and arm lymphedema and at the same time provide comfort throughout her busy day.

I would highly recommend this product, especially since Medi has a team approach to the fitting process. It is a good day when the patient, therapist, and fitting team can reach success!

Susan Montgomery OTR/L, Certified Lymphedema Therapist

West Virginia University Hospital, Morgantown, WV

Bekki is a breast cancer survivor who developed lymphedema in both arms shortly after her bi-lateral mastectomies. As a mentally challenged woman, much of her care and support is provided by her retired mother. Her lymphedema continued to worsen during radiation treatment, and her doctor sent her to see a lymphedema therapist. With her limited income from SSI Disability and lack of garment coverage through Medicare, Bekki was unable to afford garments. With her mother's help, Bekki applied to the MWGF with the hopes of receiving garments to control her lymphedema. With the support from our good friends at mediUSA , we supplied Bekki with a custom compression sleeve and glove.

You can help!

The MWGF is sustained by the generous contributions of our community. This year we plan to raise at least $25,000 to continue the work of the MWGF. As part of our Sponsor-A-Patient Campaign, a $50 pledge will support one patient by:

• Sponsoring a patient's application including a yearly membership to the NLN
• Covering program costs to administer and continue to grow the fund.  

Click Here to make a donation to the MWGF.  

For only $50 you can positively affect someone's life. But don't feel limited by one amount; you can make a contribution in any amount. Large or small, every dollar supports a patient. Check back frequently to track our progress on the thermometer! (Donors can also choose to have their name and/or logo listed)

On behalf of the many patients, therapists, affiliated clinics, and the NLN staff, we thank you from the bottom of our hearts.