Jamie’s Story

I have had lymphedema for several years. It took three years to get a diagnosis and another year to find proper treatment. My first therapist said my condition probably evolved from two factors: 1) my back surgery and subsequent blood clots at age 17, and 2) hereditary factors since my mother also had the condition, though she was never diagnosed and ultimately died from complications related to the condition. She was only 56. For years, I have worn custom-made compression stockings from Jobst using a special fabric designed for lymphedema. These stockings cost about $800.00 per pair. It is recommended that patients purchase two pairs every six months. That amounts to $3200 per year, a large sum of money for most people. I have been fortunate to have medical insurance that generally covers at least a portion of this cost. However, I usually have only been able to purchase one pair at a time, and my current stockings are over seven years old and are no longer therapeutic, which is causing my legs (both legs are affected) to swell to enormous proportions, making walking and many other activities difficult. I work full time at a community college, and it is difficult for me to have my legs down all day. But I have no choice since I must earn a living. My insurance does cover these stockings since they are medically necessary, but no provider in San Antonio will accept insurance assignment, instead wanting payment in full, which I cannot afford. This has occurred because they believe no insurance covers this item due to the fact that Medicare does not cover this item, which I find appalling. I would be dead without these medical garments, and my mother did die from a lack of proper treatment. Her legs grew to unbelievable proportions, and as a last effort to try to regain some quality of life, she decided to undergo surgery to remove large sections of this edematous tissue. She developed an antibiotic-resistant infection from the surgery and from bed sores that required additional surgery. She missed going places with me and her three grandsons or sitting on the front porch watching them play at the time. She passed away in 2000. I am now approaching the age she was when she died, and I too have had bouts of cellulitis in my legs, which results from the excess lymphatic fluid that accumulates in my legs. My activities have also been limited as my condition has worsened from time to time. I can no longer drive or go on long car trips, which limits the number of things that I can participate in, including work-related functions such as conferences. Those who have not experienced this condition have no idea how devastating it can be. I know that phrase is a cliche, but it is indeed true. I pray that custom compression garments be deemed medically necessary durable medical equipment for all sufferers of this condition because not being able to obtain this treatment dooms many to chronic infections and even death.