My physician ordered X-rays of the ankle. Nothing. She thought it might just be a sprain and recommended that we “watch it for a while.” Two months later, it was still swollen. By the time the 6-month-long program was over, my ankle had gone from egg size to navel orange. I raised concerns in subsequent doctor’s visits and was told repeatedly that I just needed to lose more weight. I found myself staring at fat women’s ankles. Extremely few had swollen ankles.
When I qualified for Medicare, I switched medical plans. By then both ankles were swelling: the left to grapefruit size, the right to navel orange. I couldn’t wear many types of shoes. My new doctor at the Polyclinic listened carefully and finally sent me to see Dr. Jeffrey Bernstein, a vascular surgeon. He looked at my ankles and the thickness of my legs and in just a few moments diagnosed lymphedema caused by an underlying genetic disorder.
I had never heard of lymphedema. Dr. Bernstein gave me what little information was available and told me to get compression garments to manage the lymphedema. I asked what type of specialist I needed to see. The answer: none. There are no physicians who specialize in lymphedema. In fact, doctors get very little training about it in medical school. Following my own curiosity, I began researching online. The condition is not curable, but lymphedema, I discovered, is manageable.
A short primer on the lymphatic system, the body’s bacterial sewage drainage system. While veins and arteries carry blood and nutrients throughout the body, the lymphatic system picks up the trash, cleanses it and deposits any remaining, cleansed fluid into the heart to go back into the bloodstream. According to the National Library of Medicine, that trash, known as lymphatic fluid, consists of “white blood cells, especially lymphocytes, the cells that attack bacteria in the blood, and fluid, called chyle, from the intestines, which contains proteins and fats.” Lymph nodes are the sewage treatment centers where the cleanup takes place.
Primary lymphedema is genetic damage to the lymphatic system, while secondary lymphedema is a result of damage to any part of the lymphatic system from surgery, radiation, chemotherapy or disease. If any of the 600 to 1,000 lymph nodes in the body are removed during surgery or bombarded by radiation or chemicals, the system cannot work properly. Lymphatic fluid, with accompanying sewage, will build up in the body’s tissues, causing them to swell. If left untreated, tissues will harden and blister, and lymphatic fluid, with all of its untreated sewage, will pour out of the tissues. This is called cellulitis (not to be confused with cosmetic cellulite) and can be deadly. The earlier that treatment begins, the less chance of a tragic outcome.
Successful treatment must begin as soon as swelling is noted. A certified lymphedema therapist will identify the areas of the system impacted and begin by wrapping the affected limb with gauze and a low-stretch elastic bandage. The gentle pressure provided by this procedure will force the fluid to flow properly within the lymphatic system. The bandaging must be done for several days, until the swelling recedes fully. This is followed by a lifetime of lymphatic massage, coupled with the use of elastic compression garments and compression devices to keep the fluid moving through the system. That was not a typo: Treatment is lifelong.
Without treatment, the bacteria not properly filtered by the lymph nodes can cause infection. As swelling increases, it spreads into adjacent parts of the body. In my case, the skin on my legs would stretch and harden. My feet became so engorged I could not wear regular shoes at all. Pain became the background noise of my life.
Many massage therapists provide lymphatic drainage, but there are fewer than a dozen certified lymphedema therapists in the Puget Sound region who can identify specific damaged areas of the system and have been trained how to use massage and other therapies to reroute the fluids around the impairment.
While some private insurance plans cover partial cost of care, few cover a lymphedema therapist’s services or the cost of compression garments, which can run from $50 to $150 each, depending on the affected limb. Fewer still cover the cost of compression pumps, which can run between $350 and $1,300. Most compression garments must be hand-washed and air-dried, and last a maximum of six months, but private insurance plans limit the number of garments to one or two a year. Medicare covers none of it, nor does any Medicare Advantage plan.
Imagine, then, a man who underwent prostate surgery or a woman recovering from a hysterectomy, facing this aftereffect without any insurance. Imagine a child born with primary lymphedema. Imagine having limited lymphedema coverage by private insurance then turning 65 and losing it all.
Any time you’re meeting with a surgeon, ask how they will deal with lymph nodes in the impacted areas. New techniques are being developed and tested that may keep nodes intact. If you are experiencing swelling, tell your doctor immediately and ask to be seen by a certified lymphedema therapist, even if it has been years since your surgery. Sign up for classes at the Northwest Lymphedema Center and attend its support groups. At a recent meeting, every person told a story similar to mine of physicians completely ignorant about lymphedema diagnosis and treatment. It leads me to wonder how many people are experiencing advanced, preventable symptoms. How many of the 650,000 hospitalizations each year for cellulitis could have been prevented with a proper lymphedema diagnosis and treatment?
Several states have passed legislation requiring private insurance companies to cover lymphedema treatment; ours requires it only in cases of breast reconstructive surgery. There is bipartisan federal legislation, co-sponsored in the Senate by our own Maria Cantwell, mandating Medicare cover lymphedema compression garments and devices. Please contact your Washington state legislators and the Office of the Insurance Commissioner and encourage it to fight for legislation to mandate lymphedema treatment coverage, especially compression garments and pumps. Contact friends, colleagues and family in other states and ask them to contact their federal legislators in support of the House and Senate bills. Millions of lives depend on it.