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Click to read "I love my Caregivers" by Wanda

Just Live With It!

By Barbara Pilvin

For four decades, until I was diagnosed with primary (hereditary) lymphedema, those four words were all I was offered.  No one knew what caused the swelling that began in December 1961, when I was 10, with inexplicable pain in my right ankle followed by painless but severe swelling from my right shin down, a problem that had spread to my left leg by 1969, my first year in college.  The assumption was that I was "whining" about a problem that existed only in my mind.  And what about the blisters that accompanied it, that started small, then grew and sprouted new ones, itching and oozing on my skin, my socks, my sheets?  What about the fiery streaks, spots and blotches on my lower extremities, the bruises that never went away?  And the aches, the sense of pressure in my feet that made me wonder if they would keep puffing up like balloons...and then pop?

“What are you COMPLAINING about?” people asked. None of them had any such trouble, of course; in fact, for decades, my father's mother and older brother were the only people I knew who did. By my late teens I had decided everyone must be right, and vowed to be stoical about it.  

But it got worse, and so did my fear of it, for I wondered what it could do to me. Could it kill me? It could certainly cripple me, for at times my feet were so swollen I couldn’t walk or even wear shoes. I remember the evening a friend came to my college dorm room, tried to get me to join her and others at a party, and gasped when I tearfully showed her my feet. 

In graduate school in the mid-‘70's, I was told by my doctor that the problem was called lymphedema, and that there was no treatment for it. Again, it was “just live with it.”

In August I skinned a toe in a swimming pool. Basic first-aid measures notwithstanding, within four days I had cellulitis, a bacterial infection that can be life- and limb-threatening. While recuperating, I read enough to know that, if I did indeed have lymphedema, I was in a high-risk group for more such infections and that there actually was a means of treating it. I demanded a definitive diagnosis, and got one within three weeks.

Today, thanks to diligent treatment, my lower extremities look very attractive. With my open-toe prescription compression stockings, custom-made toecaps (they look like gloves with open fingertips), special foam under the toecaps, and non-prescription compression stockings (my idea), no one can tell there’s anything seriously wrong with my legs.

I can wear normal shoes, even pretty ones, and only occasionally have skin infections. This is because the lymphatic fluid, which contains bacteria and other toxins, is moving better through my genetically-inadequate lymphatic system, thanks to those compression garments and the other medical devices that are an essential component of the only standard treatment for lymphedema. It’s called CDT, for complex (or complete or comprehensive) decongestive therapy, and the garments are the daytime key, while compression sleeves or short-stretch bandages and accessories are the nighttime key, as well as the 23/7 key for initial treatment.

An annoying process, right? Well, it helps a lot of people. Any cancer survivor whose treatment includes lymph-node removal or irradiation is at risk for lymphedema, and at least 30% of this country’s three million breast cancer survivors have it, according to the Lymphatic Research Foundation. So do survivors of other cancers, injury, and surgery, while only about one in 6,000-10,000 people, like me, inherit it, developing it either in childhood or adolescence (some are born with it), or as adults. Millions of people in developing nations have filariasis, a form of the disease whose cause is different but which is equally dangerous: massive leg swelling called elephantiasis, or stage 3 lymphedema, caused by a mosquito-borne parasite.

Mine had hit late stage 2 by the time it was diagnosed. Why not stage 3? I was smart and lucky: I had taken good care of my skin and kept my weight down by walking, swimming, skating, biking, watching what I ate and being blessed with some slimness genes.

Unless I have adequate insurance coverage, I'll become less and less able to “live with” lymphedema, unable to work, take care of myself, or stay out of the hospital and the ER. I’ll have repeated bacterial infections, which will eventually resist the increasingly powerful antibiotics I'll need. And then, from a disease that’s treatable and controllable, I’ll die.

Got a question or comment? Post in the 'Insurance, Medicare' forum. Share your stories in My Stories.
Category: Living well with Lymphedema


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