Pamela’s Story

September 11, 2009 my life, as I knew it, forever changed. After uterine cancer was diagnosed I went in for a total hysterectomy with lymph node removal for cancer staging. The pathology report showed that the cancer was contained and no further treatment was needed. I thought my “bump” in the road was over and I could get on with my life, that has not been the case. At my post-op appointments it was evident that I was filling up with fluid in my abdomen and pelvis. After a Cat scan was performed, I began having the fluid drained- three outpatient appointments and a total of 14 liters of fluid was removed, at the forth appointment I was sent home with two liters of fluid left in being told that my body needed to do this on its own. Six months after my last drainage I had an ultrasound to determine fluid level and was told that it had not changed, again being sent home without any direction of how long this would take or if this was going to be permanent. I still live with this uncomfortable fluid. After dealing with the abdomen/pelvic issues I now started asking about my swollen feet, ankles and legs- I had asked about this before but was told to deal with one thing at a time. The day after my surgery I knew something was wrong with my legs, I told my family that “these are not my feet, these are not my legs” it took a year and four months before I was sent to a clinic that would help me with my new diagnosis of lymphedema. The wrappings, massage and exercises all was very overwhelming but the frustration came with the denial of any help with the cost. Because of this disease I am now on disability (having to quit a job that I loved) dealing with less income but more medical expenses. I am frustrated that this is a lifelong disorder with no help. It makes no sense to deny us the equipment that we need but will pay for costly hospital bills if we find ourselves admitted because we cannot maintain this on our own. I know of no other disease/disorder that is so misunderstood medically and ignored by the health insurance companies. If I cannot afford what I need now (with husbands insurance)-what does my future look like with no help at all?! These issues need to be addressed and corrected.