Posted by: patoconnor | October 29, 2008

Lymphedema – “Just Live with It”

                              Lymphedema – “Just Live with It” 

 
                      Barbara Pilvin
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                      February 2007
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For four decades that was all I was offered. Did the increasingly severe swelling, first in my right foot, ankle and lower leg, then in the left as well, bother me? How about the blisters that accompanied it? They would start small, then grow and sprout new ones, 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?
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“What are you COMPLAINING about?” people would ask when I told them any of that. Their eyes would travel as they spoke, from my feet, ankles and legs to my face, and they would add, “No one notices your legs, Barbara!”
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None of them had any such complaints, of course, and since neither they nor any doctor I saw knew what was wrong, everyone assumed I was just “whining” about a problem that only existed in my mind. They ignored the fact that lower-extremity swelling plagued both my father’s mother and older brother, and that mine had never completely disappeared since the afternoon it had begun, in December 1961, when I was 10, with an inexplicably painful (but not swollen) right ankle, followed the next morning by blotches and streaks with terrible (but painless) ankle swelling. After five or six years with that swelling, I decided everyone must be right, and vowed to be stoical about it.
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But that didn’t make it go away. In fact, it got worse. So did my fear of it, for if it kept getting worse, what could it do to me? Could it kill me? It could certainly cripple me. By 1969, my first year in college, it affected both legs, and the blisters were unsightly, itchy, painful and chronic. Sometimes my feet were so swollen I couldn’t wear shoes. I remember the evening a friend came to my dorm room, tried to get me to join her and others at a party, and gasped when I tearfully showed her my feet.
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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.”
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In mid-August 2002 I skinned a toe in a hotel 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 diagnosis, and knew within three weeks that I had primary lymphedema.
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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 with divets cut to follow the line of the metatarsals, and non-prescription compression stockings (my idea), no one can tell there’s anything seriously wrong with my legs. The left looks a bit larger than the right, but not enough to draw attention. I can wear normal shoes, 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 24/7 key for initial treatment.
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Sounds good, right? Well, it’s better than nothing, and I’m a lot better off than many others with lymphedema. Any cancer survivor whose treatment includes lymph-node removal or irradiation is at risk for it, and about 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. Worldwide, millions of people develop it as a result of a mosquito-born parasite. This form is called filariasis, and in the photos I’ve seen, it causes elephantiasis: stage 3 lymphedema.
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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.
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I was lucky in another sense, too: I had access to expert professional care and insurance that covered my prescription stockings and toecaps.
I’m no longer so lucky. My insurance plan, like so many others, has followed the lead of Medicare, which now terms “secondary surgical dressings” the expensive compression garments that people with lymphedema need to remain healthy. In other words, the garments aren’t covered. Without them, the effects of the disease on our skin and tissues will become increasingly severe, making us unable to resist infections like cellulitis. Since any injury, even surgical, to the affected area can have this effect, amputation of a lymphedematous limb won’t improve our condition.
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With help from the staff of Senator Arlen Specter, I was able to get my prescription garments covered until last December. Now, like many others, I’m up a creek–and scared. Without insurance coverage, we won’t be able to “live with” lymphedema. We’ll deteriorate with it. We’ll become unable to work, take care of ourselves and our families, or stay out of hospital beds and emergency rooms. We’ll have infection after infection, and we’ll need increasingly powerful antibiotics for them because we’ll become resistant to the bacteria that cause them.
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And then, from a disease that’s treatable and controllable, we’ll die.
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Barbara Pilvin
 
Originally Published in
 
My Life with Lymphedema
 
February 11, 2007
 

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