When I was 17, my right ankle began to swell intermittently for several months in a row. Socks and shoes became uncomfortable, I became self-conscious of my deformed ankle and began hiding it under pants and closed toed shoes in the middle of the summer. I saw several general physicians and specialists trying to find a diagnosis. The first physician I looked to for help looked back at me with indifference in his eyes and suggested I look for another specialist. For the next few years, I continued to try to find answers to my swollen ankle. I received answers such as “drink more water” or “make sure to elevate it.” These remarks and the lack of diagnosis, caused me to assume my condition was permanent and there was no help.
8 years later I noticed small red patches on my swollen ankle and I had spiked a fever. I sought medical treatment and was finally diagnosed with Primary Lymphedema. My red bumps were cellulitis, a common infection for people with Lymphedema that could be life-threatening if treatment is not received quickly enough. It is common for individuals to be hospitalized for days at a time to fight off this terrible infection. Now, armed with a diagnosis, I began searching for information and treatment options. My Lymphedema is a hereditary condition that causes swelling in the lympmhatic tissues. It can occur in any part of the body; mine occurred in the lower legs. The best care for Lymphedema is to wear compression stockings that help reduce the swelling.
I have been surprised over the years to find many physicians do not know how to treat or manage this condition and so it is up to me to care for myself and educate my providers. Some providers are easier to educate than others. Some refuse to write me a prescription for compression stockings because they are not sure what compression level I might need, even though I tell them that I know the compression that is needed. Some refuse to write me a prescription for Keflex, an antibiotic that can treat my cellulitis immediately if it flares back up and I can’t get into a doctor right away.
Over the past 10 years, I have had varying degrees of “luck” in receiving treatment for my condition. My compression stockings cost over $130 per pair and I need at least 2 pair so I can wear one while I wash and dry the other. The stockings only last 6 months so a new pair is needed every 6 months. These have been out-of-pocket expenses for me some years, depending on my insurance plan at the time (insurance companies cover 0, 1, or 2 pairs per year typically). Additionally, I could benefit from massage therapy that works to move the fluid from the legs up through my body so it can be processed like it’s intended. This helps reduce my risk of infection and improve my overall health, however, this treatment is typically not covered under insurance plans.
I am trying to take care of myself to the best of my ability with the goal of preventing an infection of cellulitis which could cost me and my insurance plan several days in an ICU. Covering 2 pairs of socks per year (at least), providing access to specialty massage for lymphedema, and ensuring I have coverage of supplies I need at home to take care of my legs and skin seem like a small price to pay to avoid a life-threatening complication.
This is a chronic condition that has the potential to produce a life-threatening condition if left untreated. I have been lucky thus far and stayed out of the hospital, however, I am concerned that if I continue to not have access to additional treatments, my risk for further complications is increasing.
Please provide appropriate treatment for this life-threatening condition.
