Andrew’s Story

My story with Lymphedema began in 2006 with some slight swelling in my legs. By 2008 I could no longer wear normal clothing or shoes, could barely walk and suffered from constant intense constant pain. In August of 2009 I was hospitalized with pneumonia. One of the ER residents told me about Lymphedema and how it should treated. I started Manual Lymph Drainage (MLD) and compression therapy in late September. On October 29th I went to bed with a headache and sore legs, I woke up a month later in the ICU. I spent the next twelve months in and out of hospitals battling pneumonia, MRSA, cellulitis and numerous other infections. Fortunately the severity of my illness qualified me for Social Security Disability and Medicare. 

 

In 2012 I was fortunate enough to find a great team of doctors and therapists and began the long process of recovery. A daily does of antibiotics helped fight the infections and I began heavy compression wrapping. Multiple layers of foam and short-stretch bandages and daily MLD to move the fluid out of my legs.  I wrapped everyday, for up to 20 hours a day for the next two years. By late 2012 I was finally ready for garments. My garments are truly a blessing. I am able to go out without the burden of layers of foam and bandages. I can wear normal clothes and participate in activities I only dreamed about 3 years prior. I can realistically look forward to being able to work again. 

Fortunately my current physical outlook is very positive. I’ve regained control of my Lymphedema. It is well managed and my legs are stable. Through compression, diet, exercise , gastric bypass and major lifestyle changes I’ve been able to loose over 400lbs. I know my legs will never come out of compression. That I must remain diligent and focused on continuing my therapy. I will spend hours each week in the pool and gym. 

Financially I am bankrupt. Even with insurance I was unable to pay all my medical bills. I’ve lost my career, my home, my savings and my retirement trying to keep up. With such limited resources the coverage of compression garments is critical. They must be replaced every 6-8 months and normally cost nearly $1,000 a pair. Which means I am forced to budget over 10% of my SSDI check each month just for garment replacement. This doesn’t even factor in the cost of replacement wrapping supplies. 

My goal is to continue my progress towards controlling my Lymphedema, return to work, and pay forward all the amazing help I’ve received during my recovery. While it seems like a small thing, the inclusion of coverage for compression garments and wrapping supplies by insurance companies and Medicare would be a huge help.