Roosevelt resident seeks solace from lymphedema

BY JENNIFER KOHLHEPP
Staff Writer

PHOTOSBY JEFF GRANIT staff Clockwise from top: Tamara Galimidi, of Roosevelt, has lymphedema, a condition that causes fluid to build up in her legs. There is about 50 pounds of excess fluid stored in her body. Galimidi sits in the bedroom of her home. She has everything stored where she can reach it because her condition makes it hard to get around. Galimidi shows the effects of the condition. In order to get around she uses one or two canes. ROOSEVELT — Tamara Galimidi is living in a nightmare.

The 88-year-old Roosevelt resident has lymphedema, a condition that has caused her legs to swell with excess lymphatic fluid.

Up until a year ago, Galimidi had minimal swelling in her legs, up to her knees. However, after not receiving the proper care — including having her legs wrapped in gauze bandages and placed into special stockings once a day to push the excess fluid out of her body — her condition has worsened.

“I call it the nightmare of lymphedema,” Galimidi said. “Sometimes I don’t know why I’m alive when I lay down and all of these fluids are running wild around my body.”

On average, Galimidi carries around an extra 50 pounds of fluid in her legs.

“This is a big headache,” Galimidi said. “Lymphedema hinders me completely. I have trouble walking. My legs are swollen above the knee, and the rubbing causes me to lose my balance.”

To get around her home, Galimidi walks very slowly and cautiously with the support of one, four-legged cane and, if necessary, another cane.

According to literature provided by the California-based National Lymphedema Network (NLN), an internationally recognized, nonprofit organization focused on educating the public about lymphedema, lymphedema is an accumulation of lymphatic fluid in the interstitial tissue that causes swelling, most often in the arm(s) and/or leg(s), and occasionally in other parts of the body. The condition usually develops when lymphatic vessels are missing or impaired, or when lymph vessels are damaged or lymph nodes are removed.

When the impairment becomes so great that the lymphatic fluid exceeds the lymphatic transport capacity, an abnormal amount of protein-rich fluid collects in the tissues of the affected area, according to the NLN.

According to the organization, lymphedema can be present at birth or develop at the onset of puberty or in adulthood — all from unknown causes — or associated with vascular anomalies. Lymphedema can also develop as a result of surgery, radiation, infection or trauma, according to the NLN.

“Specific surgeries which currently require removal of lymph nodes put patients at risk of developing secondary lymphedema,” literature from the NLN states. “If lymph nodes are removed, there is always a risk of developing lymphedema.”

Galimidi said, “So the doctor may have damaged my lymph nodes while doing stomach surgery on me in 1974,” Galimidi said. “Or, in the old days, there was the occupational hazard of having to be on your feet all day.”

A medical illustrator and writer, Galimidi used to work as a licensed laboratory supervisor in places such as Bellevue Hospital in New York City, Bristol-Myers Squibb in North Brunswick and Hoffman La Roche in Cranbury.

Her lengthy career in the medical field allowed her to have her lymphedema identified and treated early on, during a time when most doctors never heard of the condition, Galimidi said.

“When the swelling started in 1991,” Galimidi said, “I went to the head surgeon in New York City and to numerous other doctors and research scientists in the medical field.”

“At that time,” she added, “doctors had 100 different names for this condition, but thanks to Professor Jean Smith of the New Jersey Medical School in Newark, we now know it as lymphedema.”

Although the condition now has a name, Galimidi said it still does not have a cure.

“Lymphedema is treatable, not curable,” she said. “And, if the government doesn’t change its laws and allow more money for research, there is no way that this condition will ever be solved.”

Currently, the only treatment for lymphedema is to have the affected limbs wrapped and placed in special stockings for 12 hours a day. The pressure created by the wrapping causes the fluid to travel back up through the legs and out of the body via the bladder. The fluid usually leaves the body within seven to eight days, according to Galimidi.

“When I had the ability to have my legs wrapped on a regular basis, the first three or four years, I was 100 percent perfect,” Galimidi said.

In the past, Galimidi had her condition managed successfully by lymphedema facilities in Princeton and New Brunswick. At one time, she lost about 33 pounds of the excess fluid. However, both facilities closed by the end of 2001.

Her managing physician recently wrote, “Treatment she has received elsewhere has been ineffective, if not contributing, to the deterioration of her condition.”

The problem for Galimidi today is finding someone who will wrap her legs. The bandage procedure, which requires some training, can take between 40 and 80 minutes.

At the present time, New Jersey only has one hospital with a lymphedema clinic, St. Barnabas Hospital in Livingston.

Galimidi, who survives financially on a $1,500-a-month fixed income, cannot find the means for transportation to the treatment center.

For the past two weeks, Galimidi has also had trouble getting nurses from the Visiting Nurses Association (VNA) of Central Jersey, Red Bank, to tend to her lymphedema.

“At the VNA, no one has offered to give me the treatment,” Gray said. “They used to do something that they don’t do anymore.”

Celina Gray, manager of media relations for VNA, said the VNA has provided home health care around the nation for almost a century.

Although Gray could not respond directly to questions asked about treating lymphedema, she said that the VNA gathers information about all new treatments.

Galimidi said there is currently a tie-up with the VNA getting the money from Medicare to give her the treatment. In response to that statement, Gray said it is not the VNA’s policy to turn down patient services to people who have no health insurance or little health insurance.

“We are funded publicly and privately to provide the highest quality of care,” Gray said.

Gray said the VNA is aware of all new treatments, which the association can provide when a patient has a direct order from a physician.

According to the NLN Web site, in May the Center for Medicare and Medicaid Services (CMS), Department of Health and Human Services, issued a policy designed to prevent fraudulent billing for outpatient rehab services.

The ruling states that only licensed therapists and nurse practitioners, in special instances, will be reimbursed for rehab services. This means that Medicare is only authorized to pay for rehabilitation services provided by licensed physical/occupational therapists, even if the therapists are not trained or certified in the treatment of lymphedema.

The NLN has started a public action coalition to urge people to contact local and state legislators immediately through writing to make them aware of concerns regarding this ruling’s impact on lymphedema patients.

Galimidi said, “With all the work that I did in the medical field, with all of the students, American and European, that I trained to set up their own laboratories, you can’t imagine what it feels like to not be able to get the help that I need.”

Galimidi said she hopes that state officials will step in to help rectify the matter with Medicare. She also hopes Gov.-elect Jon Corzine will spearhead an effort to get more funding for lymphedema research, education and treatment in New Jersey. Gray said people who are sick and may feel isolated should not feel like they have nowhere to turn.

“The VNA has 1,000 employees in the state of New Jersey,” Gray said, “and we are completely prepared in all home care situations.”

According to NLN, signs or symptoms of lymphedema include a full sensation in the limb(s); tight feeling of the skin; decreased flexibility in the hand, wrist or ankle; difficulty fitting into clothing in one specific area; or ring/wristwatch/bracelet tightness.

Those who notice persistent swelling should seek immediate medical advice — and get at least one second opinion — as early diagnosis and treatment improve both the prognosis and the condition, according to the NLN.

In the United States, according to the NLN, there are 157 treatment centers, one inpatient treatment program, five treatment/diagnostic centers, one physician and 63 therapists for patients with lymphedema.