|National Lymphedema Network|
| Lymph e-Channel vol. 5||September 2011 |
Call for Articles: Patients: Do you have a story to share? We're looking for patient articles to be published in Lymph e-Channel. Share your stories with other lymphedema patients, the good and the challenging along with tips that you may have picked up along the way. Clinicians:
We're looking for useful informative articles that are tailored to help
patients in their daily struggles to cope with LE.Editorial Guidelines:
All submissions should go to firstname.lastname@example.org
|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,
My staff and I are pleased to deliver our September e-Channel. Once again, this issue has lots of practical, educational, and personal information. I am amazed at how much there still is to learn, and I would especially like to thank our contributors to this issue. Linda Boyle provides us with some excellent tips to successfully maintain the lymphedema and stresses the importance of regular follow up visits with a certified lymphedema therapist, including how to appropriately care for garments, bandages and other related products. Crystal Bass, a young woman and caregiver, shares her feelings about her mom whose life has changed as a result of her advanced LE. Crystal bravely talks about her guilt; sorrow and anger towards the LE that has taken her mother away form her. In response to Crystal's article we asked Dr. Elizabeth McMahon to comment on Crystal's "Guilt of A Caregiver." Thank you, Dr. McMahon for providing excellent feedback.
Our product section is creating lots of excitement especially among our many patients. It is very helpful to receive a first hand testimonial from a patient who shares his or her experience and benefits of wearing the particular garment. Of course we know each patient is different and one garment might work better then another. These days there are numerous options including colors and patterns.
Our Marilyn Westbrook Garment Fund (MWGF) is growing every day and we continue to help as many patients as we possibly can. It is people like Elizabeth and many others (see below) who often return to a normal, self-sufficient lifestyle after they receive a well fitted garment through the MWGF. This would not be possible without the kind support from our industry partners.
We hope you enjoy this issue, and look forward to our continuing growth and relationships in the lymphedema community.
Saskia R.J. Thiadens R.N., Executive Director, and NLN Staff
|The Importance of a 50,000 Mile Check -up
by Linda McGrath Boyle, PT, DPT, OCS, CLT-LANA
It is not unusual to meet a person with lymphedema who has elastic compression garments that are more than 6 months old. In other words, there has been no evaluation or treatment of the limb or swollen area by a trained lymphedema therapist for as long as the person has had the old garments.
Below is an outline concerning lymphedema management.
Tips for Successful Lymphedema Management: Recommendation Regarding Supplies
- Know your insurance.
- Which durable medical equipment (DME) companies offer coverage for your lymphedema supplies?
- What is your annual bandage and garment benefit?
- Replace garments every 6 months if worn daily.
- Know the lifespan of bandaging alternatives and replace as recommended by each manufacturer.
- Discard short-stretch bandages after one year of consistent use.
- Replace open-cell grey foam frequently after 3 months of nightly wear, because they break down easily.
- Obtain new closed-cell foams such as orange Komprex after one year of continuous use.
- Launder or replace finger and toe bandages frequently to keep them germ-free.
- Clean or replace footwear regularly to avoid fungal infections.
The top 10 Reasons to See Your Lymphedema Therapists Every 6 Months
- To prevent an infection that could result in a hospital stay.
- To prevent the involved area from becoming larger.
- To prevent the involved area from becoming firm.
- To obtain new garments for consistent and effective compression.
- To learn about new and improved lymphedema products that are being invented.
- To review your self-care strategies which may change and reduce the time required for your daily routine.
- Your insurance company may change your garment benefit.
- If your lymphedema worsens, you may need to repeat phase I treatment, which includes daily bandaging, manual lymphatic drainage, skin care, and exercises. If your lymphedema is well-controlled, you may only need one visit for new garment measurements and review of self-care instruction.
- Most people more effectively control their lymphedema if they attend regular checkups with their lymphedema therapist.
- Last but not least, you'll receive support and encouragement from your lymphedema therapist. You deserve credit for a job well done!
Taking care of your lymphedema is a lot of work and it challenges your ability to perform daily activities. It can also be very expensive. Some people with lymphedema do not wish to return to their lymphedema therapists because it reminds them of a difficult time in their lives. However, controlling your swelling helps to prevent a cellulitic infection that could result in a hospital stay as well as a large and firmer limb. If you do develop an infection, it is important to make an appointment with your lymphedema therapist, as you may need active treatment. You may need to learn new bandaging routines and purchase compression garments with different specifications.
Regular checkups include re-evaluation of fluid volume, tissue firmness, skin condition, body weight, and exercise program. Controlling body weight and exercising regularly are important for persons with lymphedema.
I encourage you to be an educated consumer and find a lymphedema therapist that can be your partner in managing this life-long condition. You can visit lymphnet.org or clt-lana.org to find a list of therapists in your area. When moving or heading south for the winter (snowbird syndrome) please ask your current lymphedema therapist to recommend a new qualified lymphedema therapist.
It is helpful to regularly consult the National Lymphedema Network's website for new and updated information. The website contains reliable information according to current medical evidence or expert opinion.
|The Guilt of a Caregiver |
By: Crystal Bass
As you begin to read this article, you might find yourself wondering just what is this author talking about? The guilt? Well, I truly don't believe that I'm alone out there. I don't think that I'm the only one who feels the guilt that only a caregiver can feel.
I'm 28 years old, and I take care of my mother who is 58. She has stage three lymphedema. It's difficult for me to see her the way she is, especially since she was always a rock. She didn't gave in to being sick, always fought everything, and I never seen her cry. I'm angry now; I'm angry because this disease has taken my mother from me, and while she's still here physically, a good part of her has been taken away.
I feel guilty for being angry. I feel guilty for wishing that she was different. I'm jealous of my older sister, because my mother was able to play with her children, and now that I have my own one year old child, she cannot play with my son. She can hold him and verbally interact with him, but it's not the same. She can't run after him, or tickle him, or just be with him the way I know she wants to be with him.
I'm angry with myself for feeling this way, but I know that it's alright to feel this way. I know that I can feel angry and jealous, because I'm not jealous or angry with her, the person with lymphedema, but rather I'm angry with and jealous of the disease itself. Lymphedema is a selfish, cruel, ugly thing that threatens my mother everyday, daring her to take a faithful step outside. A bug bite, a scratch, a knick of anything can make her world a nightmare.
So yes, I do believe that guilt is the perfect title for this article.
Name: Crystal Bass
Type of Lymphedema: My mother suffers from Primary Lymphedema
Commentary on "The Guilt of a Caregiver" by Crystal Bass
By: Elizabeth McMahon, PhD
Crystal Bass has drawn a wonderfully vivid picture of the emotions felt by many caregivers and by people with lymphedema. I applaud her self-awareness, honesty, and courage in articulating these feelings so clearly. Her words will resonate with many readers and give validation, comfort, and relief.
It is natural to experience grief, jealousy, and anger over what lymphedema has taken away and over the need to be mindfully vigilant to minimize risk. These are normal, human responses. Crystal's story can reassure us that we are not alone in experiencing these reactions.
But some normal emotions are unwanted, uncomfortable, or embarrassing. Emotions like jealousy, anger, or grief, can make you feel bad or selfish. It is easy to feel guilty or ashamed of our negative feelings.
Caregiving requires juggling many things, including feelings. We have to acknowledge and accommodate to our negative feelings as well as the demands of lymphedema. Crystal beautifully illustrates the search for a balance between, on the one hand, grieving what is lost and, on the other hand, actively finding ways to enjoy and build on the positives that remain in our lives. We search for ways to see and appreciate the joys which are still present.
When troubled by guilt over negative feelings, we can remind ourselves of three things: First, these feelings are understandable. There are reasons for them and we have no need to feel guilty or ashamed.
Second, emotions are temporary. Feelings change and we can help them change. We can think about what can be done to improve the situation. We can notice how the way we talk to ourselves about situations affects how we feel.
Third, we can remember that what really matters is not our emotions, but our actions. What we feel is much less important than what we do.
We can seek a mindful balance between negatives and positives, between feelings and actions. We do not need to deny our feelings, but neither do we need to let them take over and guide our actions.
We can deliberately choose to accept the presence of unwanted, uncomfortable feelings, while actively turning our attention to making the most of what we have. We acknowledge the negatives, but focus on enjoying the positives that remain.
Lymphedema Sleeve Co's New Silverwave
I was so happy with my ArmCare CCL2, I tried the Silver Wave sleeve out of curiosity. Before the Armcare, I had tried almost every ready-made and custom sleeve out there. I wore my foam sleeping sleeve during the day for 2 years because I couldn't find anything else I could tolerate for more than a few hours. The Silver Wave Sleeve has a lower compression which is ordinarily not effective for me (my arm feels hollow and unsupported), but I feel great in this sleeve most of the time. I think the wave fabric stimulates lymph flow in a way that compensates for the lower compression. I have worn both these sleeves (going on 2 years) in hot and cold weather, with and without hand compression, during plane travel (ArmCare CCL2 only), and while exercising. I choose which sleeve I wear based on my needs for the day. The designs are wonderful: easy to put on, stay in place, no upper arm constriction or muffin top, no elbow crease bunching or burning. The fabric is wonderful as well: durable, easy to wash (by hand), never stings or feels clammy or hot. I think they look elegant too. I can easily wear these sleeves all day and often forget I am wearing them at all!!!! Many thanks to Solidea for making them and to Sue for finding them."
- Virginia, CT
I have had success using Solidea's Silver Wave compression garments since The Lymphedema Sleeve Company first introduced it to my clinic in 2010. People who have lymphedema, lipedema, and venous insufficiency can benefit from the multiple features of these garments.
The Silver Wave fabric has a compression level ranging from 15-21 mmHg. Although the level is low, the fabric has a micro-massage action that positively affects lymphatic drainage and venous return. As a result, patients experience decreased feelings of heaviness and decreased fluid accumulation. The fabric also feels lighter and is easier for patients to don and wear for long periods of time. The silver woven into the fibers of these garments helps to reduce bacteria on the skin and therefore decreases the risk of infection. In addition to promoting tissue repair, silver also has the added benefits of preventing unpleasant odors and making the garment cooler to wear during warm weather because it disperses heat.
The micro-massaging benefits of three-dimensional waves within the fabric work on the lymphatic and venous vessels that are just beneath the skin. It softens the skin by breaking up protein accumulation very much like a schneider pad works when bandaging to decrease fibrosis in lymphedema. Patients with lipedema report a smoother appearance of skin, perhaps from a more even distribution of adipose tissue. They can easily tolerate the feel of these garments and have reported that even though the size of their limb may not have reduced significantly they are enthusiastic about looking better. Another benefit of the three-dimensional waves is the garment does not slide as easily like flat fabric garments, which have a tendency to gather at the joints.
The Silver Wave collection of garments offers coverage for multiple areas of the body including the arm and torso. Various combinations are possible with the lower extremity garments depending on the patient's needs. For example, the Silver Wave Long which are waist-high leggings can be pulled as far distal as the metatarsal joints of the feet to serve as an open-toe garment or paired with the Power Unisex ankle sock.For patients who require more assistance with donning, there are options such as pairing the Active Unisex knee-highs with Silver Wave shorts such as the Strong or Corsaro.
The Silver Wave fabric has multiple therapeutic benefits, various options that can be matched to each individual's needs, and different color choices to compliment personal fashion. It is a cost-effective compression garment choice that has consistently received positive feedback from the patients I have recommended it to.
Jeannette Zucker, DPT, CLT-LANA
Lymphedema Clinical Specialist
Memorial Sloan-Kettering Cancer Center
This Product Review is a paid advertisement.
| Marilyn Westbrook Garment Fund|
Elizabeth is a 72 year old retired woman with stage III bi-lateral lower extremity lymphedema and was prone to cellulitis infections and ulcers. Formerly a very independent woman, Elizabeth's lymphedema forced her to rely heavily on her daughter for everyday care and help driving to doctor and lymphedema therapy appointments. She was doing well in physical therapy, but was unable to don her daytime garments or bandage at night on her own. With her lack of proper compression, Elizabeth's legs continued to get worse. Luckily, Elizabeth's therapist was familiar with the MWGF and encouraged her to apply. Thanks to the generosity of CircAid, we were able to get Elizabeth a set of JuxtaFit garments. With these bandage alternatives, Elizabeth was able to get back to her normal, self-sufficient lifestyle.
I am writing this note to thank you from the bottom of my heart for the wonderful garments that I am now using to treat my lymphedema.They are so much easier to use, and more effective than traditional wrapping.
My life has become so much more enjoyable, and it is all because of the great work that your foundation is doing. Keep up the good work. I know that your wife, Marilyn, would be very proud of you!
With much gratitude,
Elizabeth'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.