|National Lymphedema Network|
| Lymph e-Channel vol. 3||March-April 2011 |
Patients: We want to share
Don't forget to send us
a short paragraph of
your experiences with lymphedema and a picture for us to publish!
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 the Lymph e-Channel |
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.
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
| Basic Guidelines for Air Travel for People with a Compromised Lymphatic System
by Jeannette Zucker,DPT, CLT-LANA
Patients with lymphedema continue to be told that they have to be careful when they fly. But what does this really mean? This advice is often given without much detail, and as a result patients decide not to travel at all. By clarifying this misconception I hope to encourage you to travel and enjoy life to the fullest.
Flying itself is not what increases the risk for the onset or exacerbation of lymphedema. Rather, it is the combination of decreased cabin pressure along with other factors such as stress, dehydration, and prolonged immobility that makes the lymphatic system work harder than normal.
In my professional opinion, if patients follow some basic guidelines and use a lot of common sense, air travel can be a viable means of transportation.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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!
| My Journeys with Lymphedema |
by Nancy Orvis
When the Challenger blew up in space 25 years ago, I was recuperating from exploratory surgery in my left groin. The lymph nodes had nodules on them and were removed which caused lymphedema in my left leg. Thankfully I didn't have the suspected cancer. I have been blessed to be able to stay active over the years.
I retired as an elementary teacher 6 years ago, but during my years as a teacher I was able to talk about and educate my students and their parents about lymphedema. When my second graders would ask why I was wearing a compression stocking and why one leg was so much bigger, I would explain simply about the lymph system and how mine didn't work normally in my left leg. Often when I was reading to the class and they were sitting around my feet on the floor, I would feel little fingers rub my compression stocking, then my toes, and finally my normal leg. Because I wear the compression stocking all the time, I found that little fingers like to feel the difference between skin and the stocking. Our two grandsons would do the same when we played games sitting on the floor. Once children have an answer they are satisfied with they are very accepting.
I have been able to travel with my husband, Don, and take short-term trips to countries outside the US. In the picture, I was in the Middle East in April 2010. I am looking forward to going again this April. Long airplane travel is one of the hardest things for me to do with lymphedema, but I sure enjoy the country and the people once I am there. I know a lot of patients with lymphedema are afraid to fly because they are worried about the possibility of the swelling getting worse, but I have found that these practices help me. While on long flights I always wear my compression stocking, avoid soda and salt and try to drink water often. To help my circulation, I walk or stand up periodically. I also put soft cotton batting under my stocking on that bone bump on the top of my foot if the vein starts hurting. Once I land, I try to elevate my leg and do some of the exercises that Saskia gave me many years ago. Since my travels usually require a lot of walking, I spend the most time trying to get comfortable with the shoes I wear. Leather Tevas and my Nikes usually work best. I have men's Nikes since they give me a little more space to expand if needed.
Saskia was a big help to me 18 years ago when my husband and I spent a week at the Lymphedema Clinic in San Francisco. We have three married children and two grandsons and I love spending time with them. My husband has been my biggest supporter in living with lymphedema.
Combi™ by JoVi Pak
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 )
by Linda Mangione
, New York
On November 1, 2010 I discovered "lymphedema heaven"!!!!
Previously, I had been struggling with lymphedema for 4 years. I wore a traditional compression sleeve and gauntlet. This sleeve was never comfortable, especially during hot weather, bike riding, etc. Putting it on was difficult, and it was ineffective in controlling my swelling.
JoviPak has developed what I feel is the PERFECT sleeve for me - the Combi!!!!!
I have been wearing this garment since Nov.1, 2010 and it fulfills all of my needs. I am very active and I am big on comfort. The sleeve is totally comfortable, even at the wrist. I just returned from 4 weeks in Mexico and the Combi did not make my arm hot, even though the temperature was consistently 85 degrees.
It is extremely easy to put on, and due to the construction ALL of your fingers are free - another big plus. This makes it very comfortable for a variety of tasks including writing, bike riding, and using the computer. Best of all, it controls my swelling perfectly!!! I have not needed to be wrapped since I started wearing the Combi. I am so thankful Jovi had the foresight to explore a new idea for compression sleeves. I encourage everyone to try this revolutionary product if you are not getting good results from traditional compression. Hopefully, it will change your life the way it changed mine.
This Product Review is a paid advertisement.
|National Lymphedema Network, Inc.|
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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.