The main mission of our website is to inform you of this federal bill aiming to improve insurance coverage for lymphedema treatment and its progress through Congress.  We hope you will explore the rest of our website to learn more about this important bill and what you can do to support its passage.

On this blog we are featuring stories that have been submitted through our website as part of the My Lymphedema Story campaign.  We hope you are as moved and inspired by these stories as we have been. If you would like to share your story, please click on the “Share your lymphedema story” tab on the left side bar under the “How you can help” menu.

“Lymphedema Treatment is Good Business as well as Good Medicine!”

In June 2001 my mother and I were on vacation and I had noticed my right leg had swollen up dramatically. When I got back home, I called my doctor and he was able to squeeze me in. At the moment I had to take a leave of absence from work to figure out what was causing this swelling. The doctors had run tests for diabetes, cancer, blood clots, the works. Finally after 2 months of no answers I returned to work. The years had gone by and I was told by several doctors that my weight had something to do with this. Well, if it was my weight then why wasn’t it happening to both my legs?

In July 2009, I was working and my leg didn’t feel right, had gone numb. So the next day I called my doctor and again she took me out of work because she was concerned at this point. Finally in September 2009 another doctor who had been seeing me told me about Lymphedema. So that night I went home and googled it. To my and my mother’s relief there was a picture of what could have been my leg. I knew after the 8 years I would finally have answers.

I started my treatment in October 2009. Motion Recovery Physical Therapy saved me and my leg. After going 5 days a week for 3 weeks straight I had my leg back down to a somewhat normal size. In 2010 my insurance company told me and my physical therapist that they would stop paying for my treatment because it was getting too expensive and I had not reached my deductible. I had to stop my treatment.

Going to physical therapy would have cost me almost 200 dollars a visit plus bandages, compression stockings, toe wraps, everything I need to treat this. For 2 years now, I have had untreated lymphedema and at this point I’m scared. Since having the Lymphedema, I have a condtion called Cauda Equana Syndrome. It affects the back and the legs and in 2011 I had to have emergency surgery to remove two herniated discs against my spine. So now in both legs I have nerve damage and when I try to do the treatment myself I’m left with this constant numbness feeling.

I’m a big supporter behind this bill and everyone needs to know that untreated lymphedema is very dangerous. I sometimes have dry skin rashes, and even have rashes from when I try to shave my legs. Please do this for everyone who suffers from Lymphedema.

I had a lumpectomy for breast cancer in 2007. I joked to my friends that it was cancer lite because the lump was small, I had a week of radiation and no chemo. Within a few weeks my right breast and right arm started swelling. I was frantic thinking it was cancer again. I found out it was lymphedema caused by the 13 lymph nodes removed during the lumpectomy. Since my surgery I’ve had 3 rounds of physical therapy of approximately 20 sessions each with a lymphedema certified occupational therapist. I wear a compression bra and sleeves on both arms because the lymphedema has spread to my other side. The bandages are hot and uncomfortable. I have to avoid certain physical activity. I do lymphedema massage on myself twice daily as taught by my therapist. I’ve gone months with no problem to have it occur suddenly. I sometimes go to bed fine and wake up swollen. Sometimes I start the day off fine and by the end of the day it’s back. It affects my whole life.

The cancer was simple. The lymphedema is not. Thank goodness I have good insurance. I’m double covered with my insurance and my husband’s. I cannot imagine not being able to afford to have this treated. It is as important as treatment for the cancer. I remember my grandmother with her swollen arm after a mastectomy in the 50s. She’d wrap her arm with ace bandages. Let’s make sure women of today have better options and that lymphedema is covered by insurance.

I have Primary Bilateral Lymphedema, which means I was born with an inadequate lymphatic system. My doctors throughout my life, did not know what was causing my feet to swell, because Lymphedema information was not widely known. I was treated for years with diuretics, which do nothing for Lymphedema. My feet would be so swollen and painful that I could hardly stand by the end of the day. Sometimes I would just sit with my feet in a cold water bath.

A female physician correctly diagnosed my condition, and sent me to a Lymphedema clinic, where I got my compression hose prescribed for me. I have worn them every day for about 20 years, and am very controlled with them. I am going on Medicare this year and will definitely need help paying for them, so I implore our Congress to pass this bill to cover the only treatment for this incurable condition.

My husband is now 64. His medical history up until 2000 (when he was 53) was almost non-existent. Right before Christmas, he was diagnosed with congestive heart failure and coronary artery disease – and was rushed into surgery for a quadruple bypass. Next came diabetes – and that progressed to insulin 4xday. Then about 2 years ago his cardiologist matter of factly said ‘your legs – they look swollen and reddish – you have lymphedema, go to a podiatrist and get fitted with stockings’. Its called bilateral lymphedema – unknown cause.

Thus began the journey that won’t end. Stockings would be impossible for him – no way was he going to be able to wear those. The swelling and redness continued to progress, to the point where he developed scaley, bumpy hard red nodules on his lower legs and blackening feet. He gradually progressed to having legs that made him joke about being in a monster movie. His once muscular legs were turning into a pocked mass -something that made people stare. Shoes were nearly impossible. Finding treatment was a nightmare. But just finding a therapist doesnt mean it works out. Bandages werent covered they told us at the clinic – so we had to order and pay for them ourselves. Cost – around $200.00. The first therapist wasnt very professional and found a joke in everything – and finally after 6 weeks and no progress, dismissed him as a patient and said look elsewhere. For the next several months I spent hour after hour online and on the phone trying to find somebody who had proven success with treatment. It was like being in a leper colony. Doctors knew thats what he had, but finding treatment that was available in our area and hearing success stories – that wasnt happening.

Finally I came upon a Physical therapy group affiliated with Inova Hospital in Fairfax VA. Located next door to Potomac (Sentara) Hospital – it was certainly close enough to home (3 miles). The staff there is wonderful. The therapist (Megan) – is an angel!! She is so patient with this old codger, laughs at his stale jokes, makes him understand the importance of following the rules of the therapy. She is a master of bandaging – His progress has been amazing. His podiatrist said the other day – look–he has ankles again! There have been so many complications during this past 12 months – hospitalization 3 times for cellulitis, heart failure, infections in the skin – weight gains that stretched the skin to its limits; only to be brought down by Megan’s massage and bandaging techniques. He is nearing the end now – going from therapy 5 days a week down to 2, losing about 25 pounds in his legs and soon to be fitted for ‘garments’. Whatever that may be, whatever he can manage to get on, whatever insurance/Medicare decides is necessary…we shall soon find out whether this will be a journey with a happy ending or one that suddenly we find we cant afford. It has been a life changing event – and the medical profession along with the government guidelines that Medicare follows, have to be allowed to treat this as it should be.

This is one of the most crippling diseases there is – the secret disease – Lymphedema.

Sentenced to Life in Bed, but I escaped.

I have defied the odds more than once, but right now I will tell you about my lymphedema. In 1991 I had major cancer surgery. A malignant melanoma was removed from my right thigh and my lymph nodes were removed. My life was changed forever.

Malignant Melanoma can be deadly. I almost died from it. The oncologist said, “This is major cancer surgery. It will change your life. You will be bedridden for the rest of your life. You will never work again. You will never have children.” In other words, I was sentenced to LIFE IN BED.

The first year after the surgery was hell, torture, and downright depressing. I went from being an athlete, gymnastics coach, fitness trainer, and business owner to being stuck in bed. I really WAS bedridden.

With each limitation there was sadness. The one that bothered me the most was my ability to coach gymnastics. I was so upset that I could not coach effectively anymore. I realized that I must change my coaching style. My gymnasts progressed much faster after I assigned more drills and conditioning exercises. All of my success as a coach happened after major cancer surgery.

I have been able to maintain my lymphedema for 20 years because I understand the condition and I have extensive knowledge of health and exercise. There are many things that must be considered daily. The thing that most people do not understand is that I must be careful with germs. I wash my hands often, make sure my food is prepared properly, and make sure I do not step on anything that would cause infection. I never walk barefoot.

What types of exercise can I do? The best exercise for my lymphedema is swimming because I am horizontal, my leg is in motion, and it is non-impact. Other effective exercises for me are riding a bike and using the elliptical machine. Walking and running cause swelling because they are high impact. It’s best to keep the body in motion without any impact.

Lymphedema is annoying, painful, and just plain sucks at times. I am unreliable. I never schedule anything in the early part of the day in case I must wait for my leg to drain.

I have accomplished a great amount since the surgery. I have been able to live an almost normal life. My career has gone far beyond where I expected. I have published several gymnastics and fitness books, training programs, and articles. My career might not have been so amazing if I was never forced to change my coaching style.

Lymphedema has become my best friend and worst enemy. I think of it all day long, make sure it does not get out of hand, and I take care of it when there are complications.

Twenty years later… I am independent, I have a great career, and I can take care of my beautiful greyhound. I am living the life they said I would never have… It’s all good.

My name is Tami. I was diagnosed with Breast Cancer in January 2011. After my lumpectomy surgery in February, my surgeon gave me the news that microscopic cancer cells were found in my “centinel lymphnodes” and that it required that I have a “lymphnode disection” which takes more lymphnodes from under the arm pit area.

After my surgery, I was not provided with any information about lymphedema. All I was told was that a small percentage of patients get diagnosed with lymphedema after this type of surgery. It wasn’t until I started having strange symptoms in my arm and under arm/side area that caused me to be start asking everyone what was going on. No one really knew what was going on, not the surgeon, not the radiology oncologist, not the nurses, not the emergency room doctor. I went to see my surgeon several times with the complaint of what appeared to be tendons or cords in the bend of my arm that were hard and a feeling of fluid build up in my arm pit. She wanted to give me narcotics to help me “push through” the exercises they request patients do after surgery. She made me feel like I wasn’t strong enough or tough enough to push myself harder. While in the office listening to her and crying she asked her assistance to set up an appointment for me to see a physical therapist. I was informed at that time that there is usually a long waiting list to get in to see an physical therapist. After starting my radiation treatment six weeks from the time I was in my surgeons office, I still did not have any appointment with a physical therapist and the swelling started to increase. I asked my radiology oncologist if I could be seen by someone for an evaluation. I remember him expressing that he didn’t seem to think I had lymphedema and mentioned that he wasn’t radiating my lymphnodes, but I kept asking to be seen by a physical therapist trained in lymphedema for an evaluation. Luckily for me that I was starting radiation, the lymphedema clinic considered that an “urgent” reason to get me in and made an appointment for me to be seen right away. Normally they have a very long waiting list.

After my evaluation, I was diagnosed or informed that I did in fact have lymphedema and was treated during my radiation treatment to keep the swelling at a minimum.

My insurance paid for treatment and the pump but not for the very expensive garments that are required to be worn every day, all day to keep the lymphedema under control. The custom fit garments “sleeve and glove” cost approximately $400.00 and have to be replaced every 6 months. That is a total cost of $800.00 per year. You can obtain an off the shelf garment for less money but it does not necessarily fit your arm and hand size and can actually cause some issues in different areas where the fit is not tight enough for the compression to help the muscle do it’s job correctly.

I spent months trying to learn more about lymphedema, the cause the effects and the treatment. No one really knows anything about it. There are no doctors that are trained in it and no scientific studies in progress to help people find ways to improve their plight.

This is a life changing experience and no one really knows anything about it. I had doctors, nurses and others advising me to do things that in fact would cause my lymphedema to get worse in an effort to help some other issue I was having.

Lymphedema patients should be able to get “wrapped” and have the “treatment massage” specialized by only a few physical therapists without having an urgent issue like a serious wound or two centimeter or more increase in the size of their limb. They should not have to sit on a waiting list months long to be seen or speak to someone trained to help them. Their insurance should pay for modalities, treatment and education materials that will help them keep this painful and physically limiting condition at a minimum.

More attention needs to be given to this disease to generate more funding for research to find more and better treatment options.

Thank you for listening…. I hope we can bring more awareness to this very painful and limiting disease.

I am suffering from Lymphedema, where (untreated) my legs swell up to 110% of their normal volume. Treated (continual bandaging, 7 items per leg, every second day, 15 minutes per leg) they are reduced to normal size. I only wish I could attach pictures to this email.

My lymphedema began about ten years ago after I had a severe leg infection due to cat (kitten) scratches. The leg infection was so severe that I was hospitalized for four days while very strong antibiotics were administered by IV. Following that incident, my legs gradually began to increase in volume over the years to the point where I could no longer pull on normal trousers, even as large as size 52.

My GP could only suggest that I keep my legs elevated as much as possible, and that the foot-end of the bed be likewise elevated. By summer of 2010, I communicated to my GP that something had to be done. He referred me to a vascular surgeon, and I concluded that if surgery was necessary, so be it.

After examination, the surgeon stated that he would be sending me to the Renown Wound Care Center for treatment. At Renown, a physiotherapist named Susan began an intensive four month program on my legs. Treatment visits cost me a $20 copay each, with the balance covered by insurance. Throughout September I saw her three times each week. The program consisted of massage (pushing the lymph fluid up and out of the legs), bandaging (compressing the legs more and more), and exercises (both with her and on my own). Once a week the tape measure went around at eight different places, and lo and behold the numbers began getting smaller. October visits reduced to two per week, November once per week, and in December I graduated to a maintenance program.

For maintenance, I was prescribed a prosthetic product called CircAid JuxtaFit (a leg wrap for daytime wear, held by Velcro straps), and another product called JoviPak LE-AD Leg Sleeve (a leg boot for night-time wear). These prosthetics cost $200 and $470 respectively. One full set would be $1340. Two complete sets, necessary to permit washing and maintenance of one set while utilizing the other, would cost me $2680 plus shipping, NONE OF WHICH IS COVERED BY MEDICARE OR MY SENIOR MEDICAL INSURANCE PLAN.

Therefore, for the past ten months I have been forced to continue hand-bandaging as the only procedure I can afford. THIS IS WHY CONTINUING LYMPHEDEMA TREATMENT NEEDS TO BE RECOGNIZED AS A VALID MEDICAL PROCEDURE FOR TREATMENT UNDER MEDICARE AND SENIOR MEDICAL INSURANCE PROGRAMS.

Legs After Treatment

TO START LYMPHEDEMA IS NO FUN.!!!!!

NOW THAT THAT IS OUT OF THE WAY, HERE IS HOW MY STORY BEGINS. I GOT A BLOOD CLOT AFTER A SURGERY WHEN I WAS NINETEEN. I HAD TO WEAR A COMPRESSION STOCKING ON MY LEFT LEG FROM MY TOES TO MY KNEE BECAUSE OF DAMAGE BLOOD VEINS. THIS WA S NOT SOMETHING I CARED FOR BUT I HAD TO WEAR IT . IT WAS NOT VERY ATTRACTIVE WITH SHORTS OR DRESSES BUT WHAT YA GONNA DO. NOW THE REST OF THE STORY. FIVE YEARS AGO AT THE AGE OF 52 . I GOT UP ONE MORNING AND MY RIGHT LEG HURT SOMETHING AWFUL. I GOT IN THE SHOWER AND LOOKED DOWN AT MY LEG AND IT WAS AS RED AS A FIRE TRUCK. I GOT DRESSED GOT TO WORK AND HAD THE GIRLS AT WORK LOOK AT IT AND IMMEDIATELY CALLED MY DOCTOR. I GOT TO THE DOCTOR’S OFFICE AND AS SOON AS HE LOOKED AT IT HE SAID YOU HAVE CELLULITIS. I HAD NEVER HEARD OF THIS. WHAT COULD IT BE AND MY GOOD LEG , THIS IS NOT HAPPENING. I WAS TOLD TO GO STRAIGHT TO THE HOSPITAL . ONCE AT THE HOSPITAL I WAS PUT IMMEDIATELY ON INTRAVENOUS ANTIBIOTICS. MY LEG WAS SO RED AND HURT AND THEN BEGAN TO BLISTER. I REMAINED IN THE HOSPITAL FOR A WEEK AND HALF ON THE ANTIBIOTICS BEFORE I COULD GO HOME. AFTER ALL THIS I WAS TOLD I HAD LYMPHEDEMA.

AGAIN I HAD NEVER HEARD OF THIS DISEASE. WELL THE REST OF THE STORY MOST OF YOU KNOW BY NOW INFECTION IS NOT OUR FRIEND. I AM FROM KENTUCKY AND NO PUN INTENDED BUT I LOVE TO GO BAREFOOT. THIS IS NO MORE. AS A MATTER OF FACT THAT IS HOW MY FIRST INFECTION STARTED. I HAVE BEEN IN THE HOSPITAL TWICE WITH THIS. I NOW WEAR COMPRESSION STOCKINGS ON BOTH LEGS FROM MY TOES TO MY THIGHS AT A COST OF 130.00 PER PAIR NOT PAID BY INSURANCE.! NO MATTER HOW WELL YOU TAKE OF THEM YOU WILL NEED AT LEAST THREE TO FOUR PAIRS A YEAR!!! OUCH!!!

I HAVE PAIN ALMOST DAILY AND SOME DAYS IT HURTS JUST TO WALK, BUT YOU HAVE GOOD DAYS TOO. I THINK THE PART I HATE THE MOST IS PUTTING THESE CORSETS ON EVERY MORNING AND OH YES I MISS MY SHORTS AND MY DRESSES . THEY ARE A THING OF THE PAST NOW. LIFE NEVER GIVES US MORE THAN WE CAN HANDLE , BUT I WOULD NOT WISH THIS ON MY WORST ENEMY. THANKS FOR LISTENING . OH AND NEOSPORIN IS MY NEW BEST FRIEND.