My Lymphedema Story began in December 2007 when I first noticed unexplained swelling in my right foot. A few days later it spread to my left foot and then eventually to my ankles and calves of both legs. Up to this point in my life I was a healthy 46-year-old gay man who never got sick, but that was about to change very soon. I made an appointment to see my Primary Care Physician who was equally perplexed about my condition. He performed a routine physical exam and ordered various blood tests. The results came back and I was HIV Positive. One month later I was hospitalized with Cellulitis. One year later I was diagnosed with Kaposi Sarcoma and the following day I began Chemotherapy.
During the next 10 years the swelling in my legs continued, I was hospitalized four more times with Cellulitis and I had a recurrence of my Cancer. Despite numerous tests and procedures, none of my doctors were able to diagnose the problem, but instead referred to it as “a bilateral infection with unusual presentation.” Normal tasks became challenging, it was difficult to find shoes and pants to fit, and I began to isolate myself from friends and family. I sought help from a Psychiatrist who treated me for Depression. I was no longer able to work and I went on Long-Term Disability where I then qualified for Medicare.
In February 2018, one of my doctors suggested I might have Lymphedema and he referred me to a Reconstructive Plastic Surgeon who specializes in the treatment of this disease. After having a Lymphoscintigraphy exam, I was officially diagnosed with Lymphedema and began to have hope for the first time in over 10 years. What followed were weeks of Occupational Therapy with multi-layer foam compression and short-stretch bandaging. This was done as preparation for the “Holy Grail” of treatment, a Lymphovenous Bypass Surgery. The procedure is not a cure, but the goal is to lessen the symptoms and thereby improve one’s quality of life. My doctor also prescribed custom-made compression garments which are an essential part of the lifelong treatment of Lymphedema.
Now here’s the thing with Lymphedema, it’s a cruel disease which affects women twice as much as men. It usually occurs after being treated for cancer, which is why it is known as “Cancer’s Dirty Little Secret.” And sadly, Medicare will not cover the cost of the doctor-prescribed compression garments. I was told, “it will take an Act of Congress” to cover those costs. At first I thought that must be a joke, after all Medicare (and before that, private insurance) covered the cost of my six previous hospitalizations, four surgeries, all of my doctor visits and countless procedures and exams, including Chemotherapy. But it’s not a joke. It’s is the “fine print” of the Medicare legislation.
So here I am asking all Members of Congress to please add your support to The Lymphedema Treatment Act which will cover the cost of these life-saving treatments. And considering the economic toll the Pandemic has had on us all, it is even more important to pass this Act now which could very well mean the difference between life and death for millions of Americans.
