New Lebanon, OH, USA

In 2010 I had a knee replacement. I had a blood clot to the lung, but I lived through it. In 2013 I had a filter placed so I could have the other knee done. I did fine for 3.5 weeks until my left foot (on the leg that the knee was replaced) swelled up like a tree trunk. Three to four days before the swelling, the foot had been pulsating. I had a Doppler scan and it showed nothing. Three days later the knee itself swelled terribly. I went to the emergency room. They did another Doppler and found a clot from the side of my foot to my groin. The nurse tried to draw blood, but it was clotted. I was given blood thinners right away.

On the same left leg, I had foot reconstruction in 1999. I researched Lymphedema, and decided I needed to find a physical therapist that did lymphatic drainage. I did fine one but with Medicare I can only go once a year. I do my routine massage on a daily basis. Since I do garden design my job requires that I work outside. There are times when the heat affects my leg. I read a book that suggested using ice baths on it. My leg gets hard at times as well and I can be off balance. I’m 71 years old and in Stage 2 Lymphedema. I will probably never see a cure in my lifetime, although I know there is a new drug out there, but I don’t know much about it. In addition, it’s an expensive disease and I have to purchase supports, treatments, and the purchase of books and materials on Lymphedema.

I feel the lymphatic community has made much progress for us. I hope Congress continues to help make the progress needed for research and education, which is desperately needed. I appreciate all that the Lymphatic Education & Research Network (LE&RN) has done for lymphedema. Also, Kathy Bates has helped greatly to raise awareness.

This is my story of Lymphedema and how it has affected me.

Respectfully submitted,

Cheryl, New Lebanon, OH