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!”

Hello, Friends! I am a 43-year-old stay-at-home mother of four children ages 8-14. I was diagnosed with primary lymphedema in July 2004, just 6 months after my fourth child was born. With my first three pregnancies, the swelling in my legs was unsightly but reduced somewhat after each child was born. With the fourth pregnancy, however, the swelling was awkwardly and embarrassingly cumbersome and never did reduce. After six months of increasing girth in my legs and oozing of lymph fluid from my left shin (I had no idea what it was at the time), I finally visited the family physician who referred my to a vascular surgeon. 

I am delighted that my vascular surgeon quickly and correctly diagnosed my condition! I immediately underwent a 6 week-long decongestive therapy session that was moderately successful and, much to my dismay, joined the population of lifelong lymphedema gradient compression stocking wearers. I say “much to my dismay” because I have an alarmingly short lymph fluid refill duration and am not allowed to take my garments off for more than one hour a day to bathe. When I go swimming, I attract lots of attention, but it is not because I am cute or attractive: it’s because I have to wear these unsightlycompression garments and people feel sorry for me. At night, I wear compression garments that are very much like 3/4″ foam “boots.” I try to forget that I probably carry an enormously reduced level of sex appeal for my precious husband who constantly reassures me that he doesn’t care anyway. 

Although I dislike my compression garments with a passion, I also fully recognize that they are my lifeline to a long, healthy life, at least insomuch as it pertains to my lymphedema treatment. Here’s why I am writing my story: getting insurance companies to cover my lymphedema garments has been nothing short of an ongoing nightmare. When I was first diagnosed with lymphedema, my physical therapist, who is trained and certified in lymphedema therapy, got my garments pre-approved for me through the insurance company that I had at the time. However, when the insurance company realized that I would require compression garments every six months for the rest of my life, they began to balk, but unfortunately for them, coverage was clearly outlined in their covered benefits manual. As a result, nearly every single time I had my garment provider submit a request for payment, the insurance denied it. I would then write a letter of appeal, and sometimes the insurance would reverse the denial; other times they would continue to deny coverage. One time, I had completely exhausted the insurance appeal process, had to request an independent review, and even threatened to turn the insurance company in to the Nevada Insurance Commission before the insurance company would honor the coverage clearly delineated in its covered benefits manual! 

The previous information brings us up to January 2010 when my husband’s company was bought out by a multi-billion dollar engineering firm. When we selected our insurance, we were ever so careful to make sure that the insurance plan that we would buy through the company would cover my compression garments. Doing more than due diligence, my husband even called the insurance broker who represents his new company to make sure that the particular plan we would sign up for would cover the lymphedema compression garments. The broker assured my husband that the garments were indeed a covered benefit and even referred us to a clinical policy bulletin that clearly stated so! Our jubilee was rather short-lived, however, when, at the first request for payment of covered benefits, the insurance denied payment. Come to find out, my husband’s company–not the insurance company–cut out the benefit of compression garments in an entirely unrelated document. They published on the company website a list of very convenient exclusions to the covered benefits outlined in the insurance plan manual, among which were gradient compression garments for any use whatsoever! The company has decided that my garments are a “disposable, consumable” product and that they are therefore non-essential. 

In a nutshell, I am utterly appalled that insurance companies and mega corporations who have no medical insight whatsoever into the preventative nature of lymphedema garment wear are allowed to deny coverage of my garments under the presupposition that they are a “disposable, consumable” product. On the contrary, wearing gradient compression stockings that are in good condition is absolutely essential to prevent complications that may cause me to arrive at the destination of serious infection, hospitalization, and even amputation. I have no intention in going there as a lymphedema patient, and I see no reason at all to get on the bus and let the insurance companies drive me there! 

Passage of this legislation would allow me to routinely seek necessary medical treatment for my condition without fear of denial. In the past, every time my garments were due for replacement, I underwent a mental battle of wondering if I had the fortitude to fight for coverage again. But I went because I knew it was the right thing to do. Now that my insurance coverage has been summarily undercut by a corporation which makes “exclusions of coverage” decisions based on medical conditions which are well-lobbyed , I now have to pay an annual $3,000 out-of-pocket expense for my garments, over an above the $2,500 deductible! This robs my four children of their college education. I need this legislation to help me improve not only the quality of my own life but also the quality of my children’s lives! 

I am 64 years old and was born with Milroy’s Disease as was my mother, grandmother and an uncle.

Being surrounded by others with the same condition led me to believe for my first five or six years that this was the “norm”. I was basically told, “You were born with it, you’ll die with it and in the meantime learn how to live with it…and always wear ‘sensible shoes’.”

I was raised in an era where children did as they were told and accepted whatever their parents said as “law”. No effort was ever made in my early years to seek any kind of medical help. It didn’t exist in the fifties. I didn’t suffer much emotionally during my early years because I was never really teased or bullied by anyone. 

As I approached my twenties the fashion police finally relented and permitted pants suits for women and I could now hide in plain sight with my secret. In my mid thirty’s my family doctor sent me to  a rehab center to be fitted for compression stockings. They were the panty hose from hell. There was no insurance coverage available and at $135.00 a pair I finally gave up after about a year. Because of the discomfort of getting them on, constant laundering and the continual bunching at the ankle and knee I gave up. The cure was worse than the disease. With Milroy’s you are always back at square one in the morning.

I have had 64 years of “accepting” and have had a good and productive life, despite my nasty little mutated gene. I will never know if early treatment would have made any difference in the course my life took but I know that other people with lymphedema deserve a chance to try to return their lives to normal with the treatments now available.

I have lymphedema due to removal of many lymph nodes affected by melanoma. These nodes are all in my left chest area including one in my breast. The loss of these nodes has resulted in swelling of my left arm and breast to the point where my left breast cup size went from AB to a D size. My left hand swelled as well as my arm and I was told to purchase compression garments to reduce and then control the swelling. Medicare will not pay for these garments. Last year alone, we had 9,000 miles of necessary travel due to the problems from the melanoma and resulting lymphedema. I do not expect any help with the cost of mileage, but I choose to include that so that you will understand that this is not a short-term problem. This year, I have had to pay over $2,000 for the necessary garments. At this point I can afford it, but there are many people who simply cannot and have to live with the swelling and problems from that. I know that I will have to replace these garments at least every two years and do not know if I will continue to be able to afford it.  I have to have help with my housework as I tire easily and my arm aches with sweeping, vacuuming, etc. My husband does this now, but he has a heart problem and should not be doing it. I do believe that lymphedema patients should have the assurance of Medicare paying for the necessary garments in order to live as normal a life as possible.  Thank you.

At 72 years on this earth, I never expected the resultant lymphedema to occur post surgery and as the result of talking an antiobiotic, Levaquin. I have secondary lymphedema.  Both legs and trunk of my body are involved. For the rest of my life I am required to deal with this nasty affliction; there is no cure, only very expensive maintenance measures.  For example, daily wraps must be worn 100% of the time, and cost between $600.00 and $1,000.00!!! They do wear out – lose their ability to control the excessive edema, so there are replacement costs to consider. This alone makes it very, very difficult to find the monies for the wraps, much less therapy. It is a deep concern that I should not have to deal with at my age. I struggle enough each day, trying to accept the things I can no longer accomplish, due to lymphedema – walking as I used to do, without use of walker and/or wheelchair; bending down; taking care of my lower legs and feet from a health standpoint, cutting my own toenails, having to make do with ill-fitting clothes because the cost of new clothing is financially prohibited, due in large part, to the cost of maintaining my lymphedema. Also always prevalent is the risk for infections on the affected areas, thus incurring further costly care, i.e. visits to wound centers. With financial help, those of us with lymphedema could afford assistance with our skin integrity. We can’t always reach the places that need fastidious cleansing. Entering and exiting private vehicles is usually extremely difficult, thus curtailing my social life by 85%, at least. Think about all this –then tell me why this bill should not be passed. I am certainly not the only one with this awful affliction. Passage of this bill would benefit so many people. Please -pass it in a timely manner.

I have suffered from Lymphedema since I was 13 years old. It started so unexpectedly in my left leg and foot while I was sitting in my 8th grade classroom. I didn’t have a clue but went through various operations from exploratory surgery through my abdomen and open left top foot surgery twice. They told me it was Lymphedema but had little to offer on how to treat or cure it. Then at the age of 17, while at work, my right leg began to swell, my skin was very tight, and the pain was tremendous. I am now 47 and the Lymphedema has spread to my legs, feet, thighs, and hips. I believe my Lymphedema was due to injury to my body, abuse, while growing up in a most abusive household. I cannot be entirely sure, but nothing else makes sense. For a long time, I thought my condition was primary, but over the years I continued concentrating on why I am the only one in my family with this disease. I am currently undergoing treatment service with massage and wrappings but there is much more effort and action for this disease/disorder. It is very painful, especially to the touch of the tops of my legs from my ankles to my knees. I don’t feel enough has been done to find a cure, and to discover more apparati and biomedical devices that would help the suffering and pain for those of us with this disease/disorder. Medicare needs to really understand that this is a serious medical condition that requires their utmost attention and coverage for any new technology and medical treatment or cures. For 34 years my condition has gotten worse; pumps and treatment are helping, but much more must still be done in the way of insurance coverage to pay for new technology that can only help the sufferers of Lymphedema and improve our life quality. Not only is it painful, but unsightly. Thank you for opening the avenue for more medical advances and treatment; maybe even a cure.

Nearly four years ago I was diagnosed with breast cancer. ( My mother died of breast cancer 42 years ago at age 54 and also suffered terribly with severe lymphedema) Just as I was finishing chemotherapy and starting radiation therapy my husband was diagnosed with Non-Hodgkins lymphoma.  Despite two stem-cell transplants, he died a year and a half ago. I was diagnosed with lymphedema last fall and began treatment just after I went on Medicare and off Cobra. I was shocked and dismayed that Medicare did not cover the night compression garment or the arm sleeve or glove that I am required to wear day and night. The cost of these compression devices puts an enormous burden on my finances and will continue to do so. Cancer survivors have enough of a struggle to just go forward every day without dealing with no insurance coverage. Even if you have Part B, Supplimental Coverage “F” and RX drug coverage (all that is available), still NOTHING is covered. This is like saying “You have a broken leg, but we won’t give you a cast!”

Please change this law and give lymphedema sufferers the care they need. Preventing this disease from progressing to cellulitis, hospitalizations, disability and possible death would be far more cost effective in the long run. The risk is so great that even if a patient can’t afford the compression sleeves, the patient MUST have them. Wrapping in bandages, even for a capable person, DOES NOT WORK for daily wear.

So please, please, PLEASE, change this ruling.

I am a 65 year old retired teacher. I was looking forward to spending my retirement years traveling, fishing, and quilting. My world stopped when I was recently diagnosed with Lymphedema in both legs. The nightmare began by trying to understand the condition, how I was going to get treated, and my quality of life in the future.

I am on Medicare, and my husband is 75 years young and a veteran of the Korean era and is traveling back and forth over 200 miles each trip to get VA medical care. Now, I too must travel the same distance to get treatment. We have traveled over 2,000 miles in the month of February dealing with our treatments. With gasoline going up every day, I don’t know how I will be able to continue with the treatments. Medicare doesn’t pay for all the bandages and garments I need. Our savings are gone paying for all the medical devices that Medicare doesn’t cover. My limited budget did not include these costs.

Where do I cut my budget? Gasoline, food, or medicine? I tried to get help with organizations, but am told I do not qualify. I make too much money under the federal and state guidelines. I am begging my Congress to rethink who qualifies for help with medical care and medical devices. The bulk of our money is from Social Security funds. I paid into Social Security since I was 18 and my husband since he was 14. Believe me, Social Security funds are not enough to live on in today’s economy.

I ask that you pass a bill to help recognize the severity of this condition and help with the medical needs.

I did not get this condition from cancer. As of this date, my doctors are not sure how I got it, but it is permanent. My husband and I cannot go out and get jobs to supplement our Social Security. We need this bill to go forward quickly.

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.