Pat’s Story

I am a breast cancer survivor of more than 30 years and have had lymphedema in the right arm on the side of my mastectomy for the last 20 years. My arm aches all the time, and it swells, especially the forearm where I have had cellulitis several times. I manage to keep the swelling down by wearing compression sleeves and gauntlets. I purchase these and they need to be replaced often because if they are not tight, they do not keep the swelling down. The sleeves cost about $100 a piece and I really should have some specially made by Jobst or another specialty company. The sleeves are not covered by Medicare or my secondary Horizon insurance. When I get worried that my arm is swelling more than usual, I use an arm compression pump that I got about 15 years ago but it is getting worn out. With the help of physical therapists I have learned to wrap my arm with special bandages (lymphatic drainage) but it is awkward, so I do a modified form of bandaging and massage. The sleeves of my clothing often do not fit properly because one arm is larger. I am thankful that my case is mild compared to others. I try to keep an antibiotic prescription current at all times because if the lymph fluid (swelling in my arm) is not controlled, a bacterial infection called cellulitis could cause my death.
Lymphedema is prevalent and needs recognition and understanding by lawmakers and coverage by insurance companies.