Kelly’s Story

I have had Lymphedema in both legs since 2004. I had skin removal surgery along with Lipo, from this, my lymph nodes were destroyed. I wear custom hosiery, and receive Physical Therapy from a specialist in Lymphedema Treatment. Therapy includes massages, that open up the lymph system, and then I am put on a pump for at least an hour. After all of this, the therapist and assistant wraps both legs starting with my toes up to my groin. This treatment is everyday for 6 to 8 weeks. My husband does the treatment to the best of his ability on the weekends. This is recommended at least once a year. This treatment is very expensive. If it wasn’t for insurance, I would never be able to afford it. My custom hosiery is not covered by my insurance. I have had to pay as much as $800.00 for these. They need to be replaced at least once a year, sooner if my swelling goes up more than they will expand too. Also, if they get damaged, in which they will lose their effectiveness. I went too long in between my treatments this time, and I have paid dearly for that. If medical coverage would extend to my hosiery, I would freely complete treatments as needed. This has affected my everyday life in so many ways. Also, probably even more so, mentally. I don’t participate in ‘life’ because I don’t want anyone to see me. I attempt to cover my legs when possible. Or I go to the other extreme, only wear dresses so the world can see that there is a reason that my legs are huge. If there was full coverage of treatment & supplies, we could ‘maintain’ our affected appendages, not receive treatment only when we can afford it.