My lymphedema was a result of radical hysterectomy surgery for cervical cancer in 1982. I was not advised, nor aware of lymphedema at any time by my doctor. In 1993, more than 10 years after the surgery, lymphedema developed in my left leg, slowly swelling the ankle leg, groin, genital area, and often causing a weeping of lymphatic fluid through the skin.
Over the years, I have seen numerous doctors and had extensive Complete Decongestive Therapy (CDT) treatments, for the lymphedema. In 2003, three weeks as an out-patient at Lerner Lymphedema Center, New York and in 2007 for two weeks as an in-patient at Wittlinger Therapy in Austria, all paid for at my own expense. I continue monthly CDT treatments at Lymphedema Treatment, N.Y.
Every aspect of my lifestyle and work has been effected by the lymphedema, from my wardrobe, exercise, diet and travel plans, all must be take into account the chronic swelling of my leg, the infections and the prevention of the lymphedema from developing in my right leg. I have followed all the prescribed recommendations for the lymphedema condition including wearing compression hose, a Reid Sleeve, a circulation-aid, exercising, swimming, and the monthly CDT treatments. Lymphedema is exhausting, depressing and expensive.
Since 1988, I worked as a sales professional, the job involved standing for 7.5 hours a day. The standing worsened the condition, the swelling and infections increased. In 2005 I was hospitalized for a week because of cellulitis. I continued to have outbreaks of cellulitis, despite being on prophylactic antibiotics therapy. In October 2007, I was approved for the Family and Medical Leave Act time off from my job for the CDT treatments. In 2009, I retired from my job and was approved for Social Security Disability and have been on Medicare since 2011.
While I was working, it was been a constant struggle with the insurance company for them to provide coverage for a portion of the Lymphedema treatments and compression garments. But now that Medicare is the primary insurance, there is no Medicare coverage of the lymphedema treatments or the compression hose. This does not make sense to me… I am approved for Social Security Disability due to the Lymphedema, so why does Medicare not cover the two things necessary to manage the Lymphedema?
Since Lymphedema is considered a disability, I hope that the Lymphedema Treatment Act will cover this disability.
