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Lymphedema Chronicles
The Disease No One Wants to Own
Authored by Anonymous
Last night I had a dream. I was in a country western town. Pioneer women walked down the street while a little boy stopped in front of a candy store. It was a busy scene, but I was not in it. I was behind the scenes. The town was not a town. The stores were only props. Behind the stores sat people that time forgot about. Those who were injured, maimed or sick. I was, and am, one of those people.

In 1998, as a Christmas present to myself, I had bilateral upper arm liposuction. Dreams of finally being able to wear a sleeveless dress and go out dancing with my husband came to mind and I was excited about the possibility. The surgeon told me that he could really help me. He mentioned that I would have temporary swelling and possibly some unevenness, and also, that I may need to come back to have it redone later on in my life, but that fat cells were being permanently removed and the upper arm heaviness would be a thing of the past.

The day is April 19, 2000. Persistent swelling in my hands led me through two primary doctors and two vascular surgeons. I am given a diagnosis. It's a serious one.

I was diagnosed with bilateral arm lymphedema, stage one. It's a complication of the liposuction procedure. One vascular surgeon broke free enough of the "'ol boy" physician network to say that much, and I admire him for it. It is not an easy thing to speak up.

So here I am. But it's not that simple. I am filled with anger and hopelessness. My dream surgery took away fat, and I got something else, something I was never filled in about, advised about. I will have lymphedema for the rest of my life. It colors my happiness and paints my future with depressing colors. I will never be able to understand why I was denied the right to know that I could possibly get lymphedema. I see other patients bravely try to cope with their disease. I admire them. I wish they could give me some of that strength, but then I realize, I have to find it for myself.

I look around. Other women with this disease in the arms are breast cancer survivors. My physical therapist just recently handed me a lymphedema folder. It has information for breast cancer survivors. I didn't have breast cancer, nor radiation. I had cosmetic surgery.

I feel as if I am the only one.

In line at the post office, at the grocery store, I notice women, their arms dangling down, or reaching out to scoop up a child. Things I will never be able to do without adverse consequences. The lymph fluid that comes from my heart to my arms has trouble getting back to my heart. When my arms dangle, the fluid collects in my hands. The joyful days when I would scoop up my son Chris are gone. I have lymphedema. I paid for it. I didn't want it. But I got it, because I was not informed. I don't know anyone else with lymphedema from cosmetic surgery. It's hard to find the others when you feel so alone. If I am the first, I certainly want to be the last who had to go through this.

My message to the women of this country is as follows. Prior to any surgery in which the surgeon will work on your underarm, ask him about lymphedema. Have him explain it.

My surgeon surely knew that the procedure put me at risk for lymphedema. He handed my husband some compression half sleeves after the surgery and I put them on at home. They were tight. No compression agency helped me put those on. Were they even adequate? A physical therapist told me that sleeves without hand pieces force edema into the hands.

If despite this article, you have decided to have plastic surgery, make it a priority to study about lymphedema. So you don't end up where I am at.

How many women out there walk around after upper arm liposuction and do not realize that their surgery put them at risk for developing lymphedema? That it is wise to wear compression sleeves when traveling on an airplane? To avoid picking up kids, grocery bags? How much were they informed? Do they attribute slight swelling to water retention? Ask the questions now, instead of later.

This summer, I'll fly by airplane. I'll take antibiotics before I go and both arms will be bandaged for the flight. People will stare. I will fight the tears and the need to explain, and turn my focus inward, averting the obvious. I'm not well.

At the physical therapist's office, they hook me up to a sequential pump. Its job is to drain the fluid from my arms, pushing it beyond the impaired lymphatic system to the healthy lymphatics of my body, where it can make its way back to the heart. After a few minutes of this, the therapist performs manual lymph drainage to help move the lymph manually back to the heart.

Outside, the scene is of a modern town in Indiana. Cars zip down the road. Women walk down the sidewalk, chatting and laughing. But it's only a front. Enter the physical therapy centers and find women, mostly cancer survivors, struggling with tears and asking for answers, wondering about whether they will stay in stage one or progress to stage 3. Asking questions that no one can answer. They become their own doctors, the givers of advice to their own physicians. They rely on medical salespeople for information about their disease and become experts by perusing the Internet. By necessity, not by choice, they become the scholars of the forgotten disease. Lymphedema.

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