Charla’s Story

I developed lymphedema of the upper extremity following left side thoracic outlet surgery in 2011. It went misdiagnosed for 18 months. All of the lymph nodes on my left side have failed and my right side has started to weaken. I will require manual drain therapy for the rest of my life. Without therapy lymph fluid fills up in my chest cavity placing pressure on my lungs and heart. I had to give up my dream job because not only is there swelling across my chest and left shoulder/neck that worsens with repetitive motion, but I have a comprised immune system. The type of lymphedema that I suffer from is customarily associated with breast cancer, so there is limited research and help for me. I was fortunate enough to find a specialist, but with the recent cuts in insurance coverage, I am not sure how I am going to continue to receive care. My husband helps me with my compression garments, but it is way out of his knowledge base to help manually drain me and it is impossible to do it yourself. Without assistance I am left susceptible to congestive heart failure and possible respiratory complications or infection. It is critical that I receive on-going weekly care, at minimum, so that my healthcare costs can be kept low, as well as, the complications can be minimized. The passage of this act is so critical for my future care and I have decided to join the fight for its passage.