|National Lymphedema Network|
| Lymph e-Channel vol. 4||May-June 2011 |
Patients: We want to share
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|Net Pals / Pen Pals
Looking to correspond with with a special person in a faraway (or not so faraway) place who also has lymphedema? Look no further than the NLN Lymphedema Pen Pals/NetPals Network!Net Pals / Pen Pals
| Welcome to Lymph e-Channel |
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 email@example.com.
In good health,
The NLN Staff
by Jeannette Zucker, DPT, CLT-LANA
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.
| Living with Lymphedema |
by Cynthia "MsCjay" Judge
I've had breast cancer twice, in 1979 and again in 1993. I developed lymphedema eleven years after my first modified radical mastectomy at 30 years old. Initially, what started with swelling in my right hand gradually developed into my right arm. I had no idea what caused the swelling so I visited my surgeon who was of no help. He asked if I had cut myself and put me on a course of antibiotics. Because the swelling was minimal and didn't affect my lifestyle, I went on as usual. Still, my hand periodically became more swollen and each visit to the doctor ended with more prescriptions for water pills and me being told to get a sleeve. No other form of treatment was recommended.
In January of 2007 I suffered a bout of cellulitis, the result of a broken acrylic fingernail. I didn't have health insurance so I delayed seeing a doctor, until I developed red specs on my arm. I immediately went to Quick Care, where I was told that had I waited one more day I would have been hospitalized. I was given a shot and a rigorous course of antibiotics; however the swelling in my hand and arm had tremendously increased.
Things were never the same after having cellulitis. My right arm and hand were humongous and made me so self conscious about my appearance. I continued to struggle with cellulitis, and consequently my lymphedema continued to worsen. My friend, Laurita, gave me a card for the Lymphatic Center of Las Vegas and suggested that I give them a call. At the time, I put the card in my roledex and didn't think any more about it.
On October 23, 2009 I woke up unable to get out of bed. My head was pounding, my hand and arm were painful and hot, I was unable to walk or swallow. I was terrified. I called my niece and asked that she come over and help me as I could not get out of bed. I was in bed for a week.
During that time, I remembered the card that Laurita had given me and I called the Lymphatic Center of Las Vegas. I was so emotional when I spoke with Michael, and told him my situation and asked if they could help me; he said yes. I was given an appointment and I felt a sense of relief and anticipation. Was I finally getting help?
My first visit with the Lymphatic Center of Las Vegas was on November 1, 2009. I met Dr. Richard Hodnett who took one look and me and began treating me right away. He explained in detail what was going on with my lymphedema and how MLD (Manual Lymphatic Drainage) along with bandaging would help me. I was filled with so much emotion that I began to cry. I finally found a place of healing; it was like being born again.
I had treatment 3 times a week for 3 months. I was compliant and did everything that I was instructed to do. I learned so much about the lymphatic system and how crucial it is to our overall health. I also learned how many physicians are uneducated when it comes to treating this ailment. As a result of treatment, swelling in my arm was reduced by 15cm (almost 6 inches) and now I wear a compression sleeve and glove. I wear them every day in addition to performing various lymphatic exercises.
In fact, my black sleeve and glove are now my fashion statement and trade mark. I've regained the self-esteem that I lost before treatment. It's wonderful to feel good about myself again.
Now, I am an advocate for lymphedema. I appeared on Vegas Morning Blend with Dr. Hodnett to help promote lymphedema awareness, and was recently interviewed at the Race for the Cure on May 7th by KLAS-TV, Channel 8 News Now. In addition, I am actively supporting the Lymphedema Treatment Act bill which was just reintroduced in Congress.
medi's New Thorax
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!!!
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
This Product Review is a paid advertisement.
| Marilyn Westbrook Garment Fund|
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.
Just wanted to let you know that Bekki has received the compression sleeve that your fund so kindly paid for. We feel that it arrived just in time as her old garments were not fitting tightly enough and were thoroughly worn out. Her arm volume had begun to increase at almost all measurements and she had to go back to bandaging at night. Hopefully, now with the better fitting garment, her arm will improve again.
A big thank you to the Marilyn Westbrook Garment Fund for helping Bekki and others like her. You are doing a wonderful work in the world.
KC (Bekki's mom)
Bekki's case is not unique. Across the country, many patients are in need of lymphedema garments. For many of us, the benefit of proper garments is clear - they are crucial to improving a patient's quality of life.
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.
|National Lymphedema Network, Inc.|
116 New Montgomery Street, Suite 235
San Francisco, CA 94105
The inclusion of advertising, logos or Web site links within this electronic publication does not constitute an endorsement by the National Lymphedema Network, Inc. of the products or services so advertised.