by Jan Hasak on February 15, 2012
The main mission of our website is to inform you of this federal bill aiming to improve insurance coverage for lymphedema treatment and its progress through Congress. We hope you will explore the rest of our website to learn more about this important bill and what you can do to support its passage.
On this blog we are featuring stories that have been submitted through our website as part of the My Lymphedema Story campaign. We hope you are as moved and inspired by these stories as we have been. If you would like to share your story, please click on the “Share your lymphedema story” tab on the left side bar under the “How you can help” menu.
“Lymphedema Treatment is Good Business as well as Good Medicine!”
by Jan Hasak on February 15, 2012
In June 2001 my mother and I were on vacation and I had noticed my right leg had swollen up dramatically. When I got back home, I called my doctor and he was able to squeeze me in. At the moment I had to take a leave of absence from work to figure out what was causing this swelling. The doctors had run tests for diabetes, cancer, blood clots, the works. Finally after 2 months of no answers I returned to work. The years had gone by and I was told by several doctors that my weight had something to do with this. Well, if it was my weight then why wasn’t it happening to both my legs?
In July 2009, I was working and my leg didn’t feel right, had gone numb. So the next day I called my doctor and again she took me out of work because she was concerned at this point. Finally in September 2009 another doctor who had been seeing me told me about Lymphedema. So that night I went home and googled it. To my and my mother’s relief there was a picture of what could have been my leg. I knew after the 8 years I would finally have answers.
I started my treatment in October 2009. Motion Recovery Physical Therapy saved me and my leg. After going 5 days a week for 3 weeks straight I had my leg back down to a somewhat normal size. In 2010 my insurance company told me and my physical therapist that they would stop paying for my treatment because it was getting too expensive and I had not reached my deductible. I had to stop my treatment.
Going to physical therapy would have cost me almost 200 dollars a visit plus bandages, compression stockings, toe wraps, everything I need to treat this. For 2 years now, I have had untreated lymphedema and at this point I’m scared. Since having the Lymphedema, I have a condtion called Cauda Equana Syndrome. It affects the back and the legs and in 2011 I had to have emergency surgery to remove two herniated discs against my spine. So now in both legs I have nerve damage and when I try to do the treatment myself I’m left with this constant numbness feeling.
I’m a big supporter behind this bill and everyone needs to know that untreated lymphedema is very dangerous. I sometimes have dry skin rashes, and even have rashes from when I try to shave my legs. Please do this for everyone who suffers from Lymphedema.
