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Battling lymphedema: Debilitating swelling is treatable

Battling lymphedema: Debilitating swelling is treatable

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Teresa Brezenski beat a life-threatening bout of cancer in her early 20s.

But long after being declared cancer-free, her body struggles to be normal.

Those who don’t know Brezenski’s history might call her fat. But the unsightly bulges disproportionately distributed through her left thigh and both calves have nothing to do with weight -- and everything to do with fluid buildup.

Specifically, lymphatic fluid.

The condition is called lymphedema, and it is a side effect of cancer surgeries and treatment.

Lymphedema is triggered by trauma to the lymphatic system, a network of vessels that run throughout the body just beneath the skin and drain lymph fluid. When lymphedema occurs, the vessels lose their pumping ability, causing fluid to back up. With no place to go, the affected limb swells like a balloon filling with water.

Lymphedema is common among cancer survivors who have had lymph nodes removed, but it also can be caused by other things -- obesity, sudden weight gain, circulation problems, ulcers, wounds, bone fractures, kidney disease, congestive heart failure or narrowing of the veins.

Millions of Americans of all ages and gender are affected by lymphedema. Yet it is often misdiagnosed or undiagnosed; few doctors know how to treat it, said Tracy Bender, a Lincoln occupational therapist and certified lymphedema specialist with Coddington Physical Therapy.

“It is the most underdiagnosed condition,” Bender said. “It is the last system of the body to be researched and the most complicated system in the body.”

That’s because while physicians are acutely aware of how the body’s blood circulatory system works, few truly understand the lymphatic system with its important immunological and circulatory functions.

Lymphedema can take years to develop because, typically, the lymphatic system doesn’t shut down, but slows down, Bender said.

“What I find is when there is a little swelling the doctor puts the patient on Lasix (diuretic) and a compression garment,” Bender said. “Lasix pulls the water out, and you are left with big protein molecules.” Over time, that makes the condition worse, because the protein molecules are more concentrated and have less ability to move, she said.

“Skin cells lay flat on top of one another like roof shingles,” Bender added. “When they swell, the cells become like water balloons. If there is a lymphatic component that’s causing the swelling, the skin cells almost never heal together permanently without treating the swelling.”

And swelling is never normal, Bender said.

In its earliest stages, lymphedema can be reversed. But as it progresses, the condition becomes irreversible and the complications debilitating and dangerous -- cellulitis, infections and loss of mobility, Bender said. Lymphedema in its final stages can lead to lymphostatic elephantiasis, a condition where the skin becomes discolored, hard and unresponsive to touch. It usually covers a very large area.

The best treatment for lymphedema is Complete Decongestive Therapy (CDT), a therapy that involves a manual lymph-draining form of massage, compression garments, exercises and rigorous skin care.

“CDT interrupts the processes leading to chronic inflammation,” according to JOBST, a manufacturer of compression garments. It softens affected tissue by helping the body’s metabolic system work more efficiently.

Brezenski, 41, began seeing Bender nearly three years ago -- decades after her struggles started.

She was 21 when she was diagnosed with blood clots in her lungs. One year later, doctors discovered the trigger of those clots -- a cancerous tumor in her hip joint.

On her 22nd birthday she was given a choice: lose the leg or lose your life. Too young to imagine a life without two legs, she risked her life. Surgery lasted 16 hours. Her leg was split open pelvis to foot. Bone, muscle and arteries were removed and rebuilt. Doctors put her odds of survival at 15 percent.

She credits her “amazing” parents and Austin, Texas, doctor Ronald Williams with saving her life.

“I named my fourth child after him,” the mother of six said about her former doctor.

Lymphedema was a price of the cancer surgery. With no lymph nodes in her left leg, fluid doesn’t move.

She’s worn compression stockings for years. But they have had minimal success at best.

“As the swelling got worse, the leg just couldn’t bend,” she said.

The emotional toll was devastating.

“It does stuff to you mentally. You feel ugly. You feel like the limb is not a part of you,” Brezenski said. “I would ask doctor after doctor, and when nobody has an answer and nobody can help -- it is really lonely."

Dealing with it meant putting up with rude stares and comments from strangers who assumed the swelling was from overeating, poor hygiene and lack of self-control.

Dealing with it meant humiliating shopping forays looking for pants large enough to fit over the left leg.

“Even when they are loose on my left leg, they are still tight on the bottom,” she said.

Dealing with it meant encountering embarrassing horrors -- like the time she accidentally kicked the skin on her left foot. She was unaware of an injury, but noticed the lymph fluid that soaked through her bed and left footprints on her walk into the kitchen.

“It was so gross, so scary. It is so weird to have something leaking out of your body,” Brezenski said. “I learned to detach my brain from the leg. I hate my leg. I think it is a pain in the butt, and I sometimes wonder if I should have had it amputated.”

But working with Bender for CDT has literally changed her life.

“I’ve stopped calling it ‘my bad leg,’” Brezenski said. “I own it. It is part of me. I have control over it.”

Reach the writer at 402-473-7217 or eandersen@journalstar.com. On Twitter @LJSerinandersen.

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