In 2011, one year later after my hysterectomy for uterine cancer, I developed secondary lymphedema in my right leg and has now also progressed to my left leg. I was warned by a friend who had the same surgery to look out for this condition which can develop years after surgery. The surgeon dissected my lymph nodes to look for cancer and this can cause damage to the lymphatic system. I have to wear compression garments 24/7 to keep from swelling up like a fat tick. These garments need to be replaced every six months and my health insurance doesn't cover the $900 for the Jobst pantyhose or the $1,800 Circaid garments I sleep in every night. Having this condition feels like I am dragging around 10 pounds of wet sand in my lower extremities.
I have tried all kinds of things to help reverse the swelling. I did a drug trial with Stanford and Dr. Rockson for 6 months. The trial included taking tissue samples out of both my legs in the beginning of the trial and also at the end. But the drug didn't help me and while in the trial the lymphedema spread to my left leg. Which meant they didn't need to take more tissue samples out of my legs again to see if it worked.
I also tried to rounds of stem cells. I had stem cells derived from my own fat and had the stem cells put back in my system via IV. The first time I felt some improvement in my right foot. I did a second treatment but so far that hasn't fixed my lymphatic system.
Now I have found a surgeon in Los Angeles that is treating this terrible condition. My first surgery to remove the lymphatic protein solids in my right leg will happen July 2014. The cost is $50,000 and my husband Steve and I have $15,000 of the funds and currently have a gofundme.com website to help raise the rest of the money.