I am a 48 year old mother of one boy 12. In 2004, I became ill with a serious intestinal infection. After months on oral and IV antibiotics, I was able to have a substantial part of my intestine and all my female organs removed. Along with the intestines went some lymph nodes. About 6 months after the surgery, lymphedema presented in my left leg and foot. Now, after several severe infections, many hospitalizations and lots of antibiotics, I have full body lymphedema. Some have told me I have Type 2 Lymphedema and some have said Type 1. In my eyes, it really doesn’t matter what Type–because I have it. This disease will never go away. Our only hope it to “manage” it.
How can we manage it when we have little to no coverage for compression bandages and garments, Reid sleeves, Lymph Drainage Therapy and home pumps? I am currently sitting on a denial from my insurance company for a full body lymphedema pump. It is being denied because by their standards it is “experimental/invegestigational/unproven.” At first they also denied MLD Therapy because they considered it “massage.” They don’t want to live a day with this disease.
Because of Lymphedema, I have been completely disabled. The constant swelling squeezes my nerves so there is almost constant nerve pain. One breast is bigger than the other because the axilla under my left arm is impaired. There is no surgery or pill to make this go away. The only thing we are able to do is have MLD, pump, compress with garments and/or wrap. It is impossible to do that if you can’t afford to pay for it. I am now on Medicare, they pay for nothing. What my husband’s insurance won’t pay for, I am forced to borrow for. Imagine a 48 yr woman borrowing money from Daddy? I have wiped out my savings covering the “uncovered” and paying for Dr. visits and drug co pays. It is time people were made aware of this horrible disease and that doctors were taught about it in medical. Except for a very few, most I have seen have admitted to knowing little to nothing about it. It is sad when the patient knows more that the physician, the insurance company, etc. While there are many breast cancer patients with lymphedema due to their surgeries, there are plenty of us out there who didn’t have cancer but still suffer daily with the inability to get insurance coverage and/or have coverage pay for supplies. It is ridiculous in this day and age. Something must be done to educate our nation…and NOW.
