Lymphedema - Just Live With It

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Lymphedema - Just Live With It

Postby professorbilby » Sun Feb 18, 2007 2:59 am

Lymphedema - Just Live With It

Barbara Pilvin
February 2007
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?
"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!"
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.
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.
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 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.
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.
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.
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.
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.
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.
And then, from a disease that's treatable and controllable, we'll die.

Originally published: February 11, 2007

in: My Life with Lymphedema


Pat O'Connor
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Postby silkie » Sun Feb 18, 2007 4:16 am

This make my blood BOIL
For Barbara story is many lymphedema sufferers story.
JUST LIVE WITH IT is could be anyone of us in any country
JUST LIVE WITH IT is not tolerated by the World Health Organisation in the Third World Billions of pounds of Money
and research and experts from Drugs companies, The WHO and USA have gone into eradicating in hopefully in the next 10 years Filariasis as you know a terrible form of lymphedema from the Third world.
Yet in the countries that support this magnificent effort the neglect of Primary lymphedema and secondary is unforgivable and unjustifiable

Doctors who misdiagnose mistreat lymphedema
Medical help is sadly lacking thru lack of education but also funding
funding for research, and funding for the basic needs of lymphers
In the UK clinics for primary lymphedema are near non existant in many areas secondary lymphedema thanks to cancer facilities in the uk
is a little better served but sadly lacking again in many areas

In The USA supposed to be the Richest Country in the World
The best medical facilities in the world
Lymphers cannot even get support hose covered on medicare
Dear God is there NO SHAME

Silks xxx
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