Treating lymphedema at Piedmont Hospital

Lymphedema therapy consists of manual lymphatic drainage, bandaging, proper skin care, diet, compression garments and remedial exercises.

“Each patient’s therapy is individualized, depending on the severity of their condition, what other medical problems they might have and how active and mobile they are,” Squire said.

Patients can be born with or develop primary lymphedema because of defects in the lymphatic system. Other people acquire secondary lymphedema as a result of surgery, radiation, infection or trauma (such as a car accident). Those at a higher risk for lymphedema include people who have had surgery and radiation to treat breast cancer and other types of cancers, melanoma surgery or who have had lymph nodes removed.

Specially trained therapists treat patients during daily two- to four-hour sessions for four to eight weeks.

“When you get a patient who has suffered for five years without any treatment and they see results in a week, it’s very exciting,” Squire said. “It’s inspiring for therapists because you can see a difference. You know you’re making an impact and helping people get on with their lives.”

A physical therapist since 1989, Squire didn’t learn how to care for lymphedema patients when she was in school.

“I learned about it through a continuing education class and went on to become certified in 1992,” she said.

It takes 135 hours of specialized course work, a year working in the field and a passing grade on a national exam to become certified through the Lymphology Association of North America.

Squire has practiced in the lymphedema program at Piedmont since 2002. Working with the Centers for Disease Control and Prevention, she has trained health care workers in Haiti, where filariasis (a disease transmitted by infected mosquitoes that dilates the lymph system) leads to a high incidence of lymphedema.

“It was a wonderful experience and I hope to do more work there. It’s a great thing to feel useful,” she said.

With more research being done on the lymphatic system, lymphedema awareness is growing.

Yet there are still people who don’t understand it or recognize it, said Gwen Forbes-Kirby, PT, CLT-LANA, a therapist in the Piedmont Hospital program.

“We had a patient who was told that her hand wasn’t all that swollen, but you couldn’t even see the tendons,” she said.

A physical therapist for 25 years, Forbes-Kirby knew it was lymphedema and helped the patient.

“Even though I know how the therapy works, every time I take a bandage off, it’s like the first time. I’m always amazed,” she said.

Forbes-Kirby helped start the women’s center at Kapi‘olani Medical Center for Women and Children in Honolulu, when her husband was stationed there in the mid 1990s.

A breast cancer survivor, Judy Muncaster, made it possible for Forbes-Kirby to get lymphedema therapy training.

“She had breast cancer and developed lymphedema, but because she was a flight attendant, she could fly to the mainland for treatment,” Forbes-Kirby said. “When she recognized that the treatment was not available in the islands, she wrote a grant that sent me to Australia for training.

“For a while there, I was the only person in the Pacific Islands trained to do the therapy, and my patients came from all over. That taught me that one person can make a significant change.”

At Piedmont, Forbes-Kirby established the Maximal Reach program for breast cancer patients.

“We let them know their risks after surgery and radiation, follow them through their treatment and help them get back to their normal activities,” she said.

For patients who already have gone through surgery, hair loss and side effects from chemotherapy and radiation treatment, developing lymphedema can be overwhelming. Forbes-Kirby is excited that researchers are looking for a genetic component to primary lymphedema.

“This is an amazing field, and we’re seeing changes every day,” she said.

The therapists at Piedmont work closely with the Lighthouse Lymphedema Network, a national organization that spreads the word about lymphedema and supports patients.

Educating patients and the public about lymphedema is a big part of the job, especially with a growing population and an increasing number of cancer survivors, said Jackie Echols, OTR/L, CSLT, a clinician with the lymphedema program at Piedmont.

“Lymphedema patients come with many challenges,” she said. “Getting compression garments on swollen limbs is a task, but then occupational therapists are the queens of creating adaptive equipment.”

The job requires hands-on, physical work. Lifting and wrapping the swollen limbs of 200-pound patients isn’t easy, but seeing their relief is worth it, Echols said.

“When we take the bandages off, the limb is smaller and not so heavy or hot,” she said. “The skin is supple, less tight and the discomfort is greatly reduced. Our patients are so grateful.

“We spend about a quarter of our time on skin care, because obese patients can get infections easily. We work closely with our wound-care specialists and see a lot of complicated cases here.”

Not every hospital has a lymphedema program, and even fewer have five certified specialists.

“This is the best group of people I’ve ever worked with,” Forbes-Kirby said. “We’re all doing something we really love, and we get ideas from one another. There’s a great synergy here that helps our patients.”