Dear friends of the NLN,

Spring is here and I hope this season finds you more active and healthy. If you haven't noticed, we have changed the title of our e-Newsletter to Lymph e-Channel. Rest assured, Lymph e-Channel will continue to feature practical and educational articles as well as special tid-bits and stories from lymphedema patients. I am still amazed that after 20 years, I continue to learn from the experiences shared by our patients.

A regular feature of Lymph e-Channel is our Product Review section. In every issue a new product will be introduced and reviewed by an experienced lymphedema therapist. This is a great way to learn about all of the options that are available for treatment!  

Also highlighted in this issue of Lymph e-Channel is our special campaign for the Marilyn Westbrook Garment Fund (MWGF). For those who are not familiar, the MWGF was established in 2008 to provide underserved patients with essential garments for treatment. The NLN is honored to be able to improve the lives of so many patients. We can't do this alone and are counting on you for help. Read about our campaign below to find out how you can Sponsor a Patient!

I hope you enjoy this installment of Lymph e-Channel! We love hearing and learning from you so please send any comments and feedback our way.

Respectfully,

Saskia RJ Thiadens, RN

Executive Director, NLN

Marilyn Westbrook Garment Fund

The Marilyn Westbrook Garment Fund (MWGF) has been a huge gift to many of our lymphedema patients.

Since May, 2008 the fund has alleviated suffering and improved the quality of life for both young and old who are affected by lymphedema. It was Marilyn Westbrook's wish to ensure that no other person with lymphedema would have to suffer as she did prior to her death. Fueled by this simple yet beautiful request, many have answered Marilyn's wish and today we have changed many lymphedema patients' lives with the fund. Our hope is to be able to reach out to many more patients, with the ultimate goal of offering coverage for LE treatment.

You can help!

This year we plan to raise at least $25,000 to continue the work of the MWGF. Please join us in our efforts by supporting the fund.

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.

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 helps support more patients. Donors can also choose to have their name and/or logo listed. Check back frequently to track our progress on the thermometer.

Click Here to make a donation to the MWGF and please specify in the comments section that your donation is for MWGF.

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

Lymphedema Awareness D-Day Recap 

 

Lymphedema D-Day, March 6th, was a great success this year! Many of our members honored fellow patients, caregivers and therapists. Check out the Action Corner section of July's LymphLink for more photos and stories. You can still submit your stories and/or photos of your D-Day celebrations if you would like to! Submissions should be sent by April 22, 2011.  

   

Congratulations to Jordan Schessler for being recognized by the New York State Senate and Assembly for her outstanding advocacy and fund raising for lymphedema research. A Legislative Resolution was adopted February 28, 2011 in New York, K137-2011.

Talia and her mother Deborah Frombach honored Heidi Schaffer and Jamie Palmer on D-Day. Heidi is Talia's therapist and Jamie is an Occupational Therapy Student at the University of Puget Sound. Talia states, "They are both inspirations and we couldn't imagine our lives without them". (Pictured below, from left to right: Jamie Palmer, Debbie Frombach, Talia Frombach, and Heidi Shaffer)

Klose Lymphedema Care held their 2nd Annual Lymphedema Awareness Day celebration in Lafayette, Colorado. Saskia attended to present D-Day Awards to their honorees.

Dr. Nancy Hutchison, the new chair of the NLN Medical Advisory Committee (MAC), received a very well deserved D-Day Award by Saskia during the MAC meeting in Chicago. With all her knowledge and clinical experience, Dr. Hutchison is truly dedicated to the cause.  

For more information about D-Day please visit: www.lymphnet.org/lymphedemaFAQs/legislation/awarenessDDay/dDay.htm

1. Consider where you are going and what the physical demands will be. If your trip will involve physical activity that you are not accustomed to then it is important to build endurance and strength. You can achieve this by going to the gym more regularly or you can also "sneak" exercise into your daily routine by doing things like walking up stairs instead of taking the elevator. Most importantly, gradually build up your level of fitness, working within your level of comfort; doing so prior to the trip. Also make sure to speak with your doctor or therapist regarding any particular restrictions you may have to exercise.    
2. Bring only the bare essentials. Heavy luggage can strain your muscles. Think about the essentials (clothing, shoes, etc.) and only bring what you will use. In general, try to pack lightly and tightly. Try packing things in as few bags as possible so that you are not fumbling with multiple pieces of luggage. Even consider having everything shipped to your destination. Be sure to ask for help from family and friends or even from drivers and airport personnel.
3. Use rollers and backpacks. Although luggages without rollers are somewhat obsolete these days, I still see people using them. Make sure that only rollers are used and that any over-the-shoulder bags are lightweight and wide-strapped so that they don't cut deep into the shoulder area and interrupt lymphatic flow.
4. Avoid tourniquets. Oftentimes, great care is taken to avoid blood pressure cuffs, tight jewelry, and other things that constrict and cut off circulation. However, there are times when this occurs in ways that are not so obvious. For people who have their arms involved or at risk, it is important not to hold heavy plastic or thin-handled bags that create tourniquets in the hand.  For people who have their legs involved or at risk, do not cross you legs while sitting. Change your socks every day and make sure your nails are short for good hygiene. Choosing proper footwear is important. Avoid sandals, tight, strappy, and poor-fitting shoes. Make sure to bring shoes that you know are comfortable and not only will you be sure to enjoy your trip but your feet will be so grateful.
5. Pack well in advance. If you finish packing at least 2 days before flying, you can stick to your usual routine and avoid being sleep-deprived, stressed, or cranky. You'll minimize stress, be less likely to skip meals, and more likely to maintain hydration.
6.  Eat healthy meals and bring your own snacks. Skipping meals because you're so busy packing for the trip or too busy throughout the trip causes you to eat whatever is available such as airport and airplane food, which is high in salt. Salt increases fluid retention in your body and mild swelling may result even if your lymphatic system is not compromised.  So by eating meals at regular times and bringing your own snacks, you'll be able to eat things that you enjoy and avoid hunger attacks.
7. Drink plenty of water. The opposite (drinking less water) may seem true, but drinking more water is important because lymph fluid has high protein content.In order for protein to be removed from your tissues, it needs water to move it. Having more water available means "protein traffic" moves better which also means decreased risk for lymphedema.
8. Choose a seat with a lot of leg room. Try getting to the airport earlier than expected so that you can request bulkhead seats, which are the first seats in coach. These seats have enough space for you to elevate your legs, perform exercises, and get up to walk the aisle without worrying about inconveniencing your neighbors. If bulkhead seats are not available, aisle seats are the next best option.
9. Exercise throughout the flight. Simply put, good blood circulation also means good lymphatic flow.  Perform simple stretches or range of motion exercises throughout the flight while in your seat. But also make it a point to walk up and down the aisle as much as feasible.  The longer your flight, the more often you should do this. Exercise will have the added benefit of decreasing your risk for a blood clot, which is a well-known concern for all air travelers.
10. Wear your garments. If you have been diagnosed with lymphedema, compression garments and alternative garments are essential on a flight. You can wear daytime garments or durable bandaging alternatives, which ever provides the support you need. If you have a new garment wear it a couple of days prior to the trip and make sure it fits correctly. For upper extremities, a handpiece (either a glove or gauntlet) should be worn with the compression sleeve. Leg wear should not be too tight and constricting or make it difficult to go to the restroom. For people who do not have lymphedema, but are at risk of lymphedema, talk to a lymphedema provider about whether you should wear a compression garment. There is no evidence that wearing a garment when you do not have lymphedema will cause lymphedema. This is an individual decision based on your specific situation. A note from your doctor regarding lymphedema may help answer security questions related to bandages and garments when you are screened.
11. Bring your Medications.If you have a history of infections make sure to carry antibiotics or a prescription for antibiotics, especially when travelling outside the US.Wear a LYMPHEDEMA ALERT bracelet (upper extremity) and/or necklace (for lower extremity) during your trip in case of emergencies.

Although there are no guarantees, if you follow the above guidelines flying can be an option to get where you want to go without necessarily increasing your lymphedema risk. There are so many variables that have yet to be considered and hopefully research will one day provide more concrete guidelines.But until then, bon voyage and safe travels!

zuckerj@mskcc.org

Combi™  by JoVi Pak 

Therapist Review:

by Linda Stowell, PT, CLT-LANA

My name is Linda Stowell and I am a physical therapist with 40 years of experience (yikes! and I still have so much I want to learn!!) For the last 12 years I have worked at The Lymphedema Center at a hospital in Fort Worth, Texas.  About 60% of our patients are being treated for breast cancer, or are "thrivors" of cancer.

The Combi sleeve  has been added as an option shown to patients with lymphedema in the arm. The temperature in Texas starts warming up in March, and doesn't drop to "cool" until late October.  Since the Combi is light weight and made of cotton, it is a winner for warm weather (and hot flashes). Because bandaging an arm can be overwhelming for people to do themselves, the Combi is a terrific alternative. Donning the Combi sleeve is easy because the sleeve of chipped foam in soft cotton is combined with stretch compression fabric on the outside. 

Our patients report wearing the Combi for day and/or for evening relaxation time.  The Combi is not recommended for overnight wear. With the ease in using the Combi, patients report speedy reduction of arm swelling and congestion . For example, one patient who is so busy reports that she wears her traditional JoVi pak and outer jacket only in the car as she drives to her next activity.  People with hectic schedules who want quick and effective results should consider a JoVi Combi.

(Contact info: LStowell@BIR-Rehab.com )