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Living With Lymphedema

© Keith Smiley

I've lived with this for the past twenty-five years. This rare disorder that affects thousands of people, mostly women, came in to my life when I was 12 years old. That's how long lymphedema has been a part of my life.

Lymphedema is an accumulation of lymphatic fluid in the interstitial tissue that causes swelling in either the arms or legs, and occasionally in other parts of the body. There are two types of lymphedema, primary and secondary lympedema. Primary lymphedema (What I have) can develop when lymphatic vessels are missing or impaired. Secondary lymphedema develops when lymph vessels are damaged or lymph nodes are removed. There is currently no cure for lymphedema.

Fortunately, since I have primary lymphedema, I live with virtually no pain in my foot or leg. I can do almost anything everybody else does. I exercise regularly. Workout routines include jogging, using a stairmaster, speed walking on the treadmill, riding a stationary bike, using a rowing machine, lifting weights, doing situps and pushups. As you can see despite having lymphedema I still lead a normal life, but keep in mind I have the mildest form of this disorder.

Life with primary lymhedema is basically the same everyday. My leg generally swells throughout the day and then goes down at night. To prevent my foot and leg from swelling to much, I wear an elastic stocking that goes from my foot to the top of my knee. When I go to bed at night, I sleep with my foot elevated so the swelling can go down. I have a home hospital bed, courtesy of my cousin, which comes with remote controls. I can raise the the head and the foot of the bed as high as I want. Of course, I raise the foot of the bed at about a 90 degree angle so the swelling in my foot and leg will go down.

The only problems I have dealing with this disorder is wearing shoes at least two sizes larger. Without lymphedema I would be a size 11, instead I have to wear a size 13.

However, the most recent problem I've had is a little more serious. In the past three years my foot has developed an infection. The doctors aren't sure what causes it, but the only way to treat it is with antibiotics. The first time I got the infection I had to stay in the hospital for a week while they hooked me up to an IV and pumped me full of antibiotics. The second time the doctor prescribed some antibiotics and ordered me to stay off my feet for three days (it happened to be a Friday, Saturday and Sunday).