Donna’s Story

by Heather on March 25, 2014

I have what they call Latent Primary Lymphedema. I was 61 years old and had an epidural for pain in my back. A few days afterwards my ankles started to swell. I elevated my legs, but it didn’t help. Within weeks the swelling went up my calf and into my right foot and toes. I saw my cardiologist thinking it was my heart. After many tests I was diagnosed with Lymphedema. 

I went to a Lymphedema therapist who wrapped my leg to reduce the size. It then spread up my leg to my thigh. My left leg also had the swelling, but my right leg was twice the size of the left leg. I’ve been wrapping and wearing compression garments since then. My knee is swollen and does not bend as it did. Going up steps is harder and I’ve fallen quite a few times. Recently after a gyn exam, I developed lymphedema in my groin and part of my abdomen. 
I needed further garments to control the swelling from moving even further up my stomach. Without the garments my Lymphedema will increase not only the volume but how far it travels through my body. 

I will be able to get Medicare next year when I retire. My biggest fear is that I won’t be able to afford the garments that I desperately need. 
Having Lymphedema has impacted my life so much. I constantly have my legs wrapped in compression garments, my movement has been slowed enormously, and I have to wear special shoes to even fit my swollen foot, and I spend many hours wrapping and taking care of my legs. Infection of any kind will increase my swelling. 

There is no pill or medicine to help my condition. Garments and bandaging is the only way to help Lymphedema. Congress must act to help those with Lymphedema. If they do not pass the Lymphedema Act, many of us will suffer by not being able to pay for desperately needed garments to control our condition. 
Garments, bandaging and therapy are the only means and hope for someone with Lymphedema. I know I will be affected by this condition for the rest of my life. I’m praying that Congress will not deny us help with the only way we have to deal with it.

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