I have lymphedema as a result of a mastectomy and radiation treatments for breast cancer. About a month after my surgery, I had lymphedema swelling in my arm, but none of my doctors paid any attention to it, nor did they prescribe any treatment.
My untreated lymphedema promoted another serious condition, a skin infection, caused by step bacteria that got into the swollen skin, called cellulitis. The cellulitis demonstrates itself not just with the typical lymphedema swollen arm, but with tender skin, a fever of 103.5 and a hot-to-touch rash that spread from my fingers to my arm pit, then from my collar bone to my belly button, across my chest, stomach and back. I had pockets of lymphatic fluid in my stomach, chest and my arm was basically hardened and full of lymphatic fluid as well.
The arm filled with lymphatic fluid was a Petri dish for the strep bacteria to fester. It took 10 doctors over 16 months to diagnose me, in which time I had about 30 outbreaks of cellulitis and fevers. I was finally hospitalized in May 2009. Due to the lymphatic fluid in my arm, I continued with frequent outbreaks of cellulites despite IV antibiotics. Finally last month, after a year and a half, I was able to start lymphedema therapy at a local hospital. They couldn’t work on my lymphedema while the strep infection was active, and the continuing lymphedema caused repeatedly frequent outbreaks of cellulites.
I began lymphedema therapy three days after my last cellulitis treatment ended. Now I have been cellulitis free for 50 days! This is the longest clean spell I have had in almost 2 years-my episodes have reoccurred every 7-21 days in the past. The therapist does wrappings and massage to loosen the toxic fluid from my arm. Soon I will move onto a compression wrap that I will need for the rest of my life (I am 48). Fortunately, for me, my therapy is covered by my insurance; my problem was caused by doctors who didn’t recognize the connection between the lymphedema and the cellulitis and never diagnosed me with either one for so very long.
I have made incredible progress with the therapy; this week I saw my wrist bone for the first time in a year and a half. The skin on my forearm has loosened and the pockets of fluid are dissipating.
Without insurance coverage to cover the lymphedema treatment, I could have died from the cellulitis, which is a direct result of the lymphedema. The strep bacterium from the cellulitis eats holes in your heart and can turn into flesh-eating bacteria. I would have never been able to afford the therapy; each visit is between $450 and $600. I understand I will be plagued with the lymphedema and cellulitis for the rest of my life.
I thank God that I did enough research to understand the connection between the lymphedema and cellulitis. My infectious disease doctor, despite his reputation of brilliance, did not understand why I need the lymphedema therapy. But thankfully he was cooperative enough to write me the prescription.
I have grave concerns about what will happen to so many of us suffering from this disease if this coverage is eliminated. It is needed, it saves lives. Before the therapy, I was in and out of the hospital, barely able to keep my job. Lymphedema is a debilitating illness.
