My story goes back to my grandmother, mother, aunts, and female cousins. Lympedema (LE) goes back at least that far on my mother’s side of the family. My childhood memories are filled with visions of swollen, shapeless legs. Until I went to school, I thought this was how legs were supposed to look once you became an adult.
My grandmother’s legs were like stone, with a dark gray-black scaling on the shins. She never had the benefit of any kind of compression garment and probably never knew if such things existed.
My mother’s legs were so swollen that she had multiple staph infections. Her only shoes were Dr. Scholl’s wooden sandals, despite living in Brooklyn, New York. There was a shoe repair shop on our block that would “sculpt” the wooden sandals to better fit the soles of her feet and create vamps for special occasions, such as her nephew’s wedding. Once we moved from New York to California, the shoe repair shop was no longer an option. As her Brooklyn sandals wore out, she would replace them with new ones that were ill fitting because they were three sizes to big in order to accommodate the swelling of her foot. They were also easy to fall out of because they were too long and were slip-ons.
One horrific day, I heard a scream coming from my parents’ bedroom. I ran in to find my mother impaled on the bed frame just above her ankle! Any person without LE might have had a nasty bruise, a scrape, and a trip to Urgent Care for a tetanus shot. My mother’s LE meant that we had to call 911. The fire dept. (this was the 1970s) made a decision to cut that length of bed frame away from the rest of the bed to control bleeding (with LE, a tourniquet can be as dangerous as bleeding out). After returning from the ER stitched up with orders to get bed rest, she and my father had no bed to sleep in. The box spring and mattress were on the floor until my father could get a new bed frame.
My mother never had the benefit of LE treatment. Her doctors put her on “water pills” (diuretics) and told her to lose weight. One doctor told her that there was a course of treatment in Europe that was promising. Then he added that if she were a rich woman, it would be possible. She never saw any hope, dying of pancreatic cancer in 1981, two years before my grandmother died.
For me, LE started with puberty. I remember my mother sobbing uncontrollably when I showed her that my insteps had developed humps of extra flesh and my ankles had creases from swelling over my shoes. I considered myself lucky that the maxi-dress came into style just as my LE geared up. I went through my teens hiding my swollen legs under pants and long skirts. I wore flip-flops because I could no longer get ever a EEE-width shoe to fit my feet.
LE would intensify during menstruation, and later during my three pregnancies. Despite knowing what my condition was and what could happen, I couldn’t even get a primary care doctor to see the problem. I was told to lose weight. Ironically, obesity can be one of LE’s symptoms.
When I was 32, I had a blood clot in my right leg behind my knee. It went to my lung, and I spent two weeks in the hospital. My stay included three days in ICU with a 50/50 chance of surviving. Because of the swelling in my legs, the doctor had to perform a cut down to find a vein to use for the test to determine blockage. An ultrasound would have done the job on a patient without LE. It’s probable that LE didn’t cause the clot, but it certainly made the diagnosis much more painful.
By the time I was in my late 30s/early 40s, I started using mobility aids Furthermore, I started seeing leakage of lymph through pores in my right leg. The doctor who saw me in Urgent Care was the rare professional who told me that I had LE, thinking I didn’t know what caused the swelling. What a joy it was to talk to a doctor who understood. He mentioned the National Lymphedema Network, telling me that I should look it up on the internet. .
After that, I tried to advocate for some kind of LE treatment. I refused to be passive in during exams. I decided to bring information I found online (such as it was 15-20 years ago), family group pictures of ample women with swollen legs, and a photo of myself when I was much thinner and still had swollen legs. I was ready for every argument I ever heard except for the one I got: I was a hypochondriac. The primary care doctor that Kaiser Permanente assigned to me believed that I fixated on this imaginary disease while surfing the web! Family pictures didn’t sway her opinion. I was just lucky that she sent me to physical therapy to prove me wrong.
I was surprised to learn that there were two physical therapists trained in LE bandaging therapy. They had been treating post-mastectomy patients who acquired LE when cancerous lymph nodes were removed. I found out that LE caused by surgery tended to be treated from the beginning without question. LE that occurs congenitally, like mine, was — and still is — the stepchild. I don’t know if it’s because a natural occurrence is more rare (and we’ve learned to “live with it”) or if it’s the dramatic change in a post-surgical occurrence that gets more attention. Whatever it is, the whispered truth is that there is better coverage for post-surgical LE than for mine.
In case I thought this was an exaggeration, my education was swift and had sticker shock to go with it. After three weeks of the bandaging therapy, with my attendance every other day with a $30 co-pay, I was measured for Juzo compression stockings. They’re often mistaken for support hose or TED hose, but the point of compression stockings is to help maintain a normal shape to the legs after bandage therapy. They aren’t sold by the pair because there are more cases of single-limb LE (at least that’s what I was told back then). Each stocking cost $99 for a total of $198. Insurance covered my first pair, but refused to cover subsequent purchases. i could barely afford one pair a year, which I wore every single day and washed every night.
About five or six years ago, the swelling in my legs was more than the stockings could handle. At UC Davis, it was much easier to be seen by an LE physical therapist. My insurance only covered six visits over the three weeks, with $30 co-pays for each visit. Since the bandages needed to be changed at least every 48 hours, we came up with a schedule that accommodated the insurance limitations. This included my creating a video of the bandaging process as a tutorial for our daughter (she couldn’t get off work to learn how to do it in person).
When the three weeks were finally over, I discovered that I needed to wear a compression garment that was sturdier than the stockings. It took a couple of tries before I could get the right kind of “wraps” for me. Solaris Ready-Wraps works better for me than Farrow Wraps, and are less expensive. Even so, I can’t afford to make the purchase all at once. Each foot piece costs about $55, and the calf pieces are a little over $100 each. To buy a complete set through Amazon, it would be over $300 plus shipping. There is no vendor in the Reno/Sparks area of Nevada, and I really am not up to traveling to Sacramento to a private vendor who would probably charge more. Our insurance plan doesn’t recognize wraps as durable medical equipment (DME). I defy them to show me one person who will wear wraps for any reason other than LE! Wearing any kind of LE wraps means that shoes are restricted to orthopedic, athletic shoes, or (my choice) Crocs. On the occasions when I wear a dress, I can’t wear shoes that match — no sandals, pumps, or anything other than ulta-wide lace-up or the rare mule style. If you’re a woman, you understand. If you’re a man, ask a woman. Just check a woman’s closet, and you’ll find at least three or four pairs of shoes in each style — dressy, sporty, sandals, slippers. I have one pair of black Crocs — in Size 10, although my foot length would only need an 8.
When I compare the availability of knowledgeable professionals today with a decade ago, and certainly in my mother’s and grandmother’s times, it’s obvious that LE can be treated — for a price. This isn’t a luxury. Paying out of pocket for durable medical equipment because insurance companies treat it like clothing is ridiculous! If I go without, it won’t be long before I’m in the hospital with the same staph infections my mother suffered through.
I worry that my 30-year-old daughter may someday get LE or pass it to a future generation of women. I don’t tell her about this because she isn’t showing symptoms — yet. If, God forbid, LE is in her future, I would hope that her insurance will cover treatment without costly co-pays and limits that don’t fit the treatment regimen. I would hope that compression garments would be covered by her insurance, and that she could have enough sets to be able to wear one set while laundering at least one other set.
