My Life with Lymphedema
March 6th is World Lymphedema Day. Many of the Three Million plus throughout the world do celebrate the day, grateful that they are alive and more grateful that they have compression that keeps the disease at bay. Many of us have what is hyped as “body dysmorphia”. I think that’s the term. This is when your legs are so full of water they are pockets and they bunch up to your torso on uneven section until they weigh roughly maybe 30 liters or more into themselves.
Our disease is a water-borne one. Our Lymph nodes are unable to work due to us having a snafu in breast cancer or other surgeries or other disorders. Once the lymph nodes, our bodies “cleaner upper” stop working, we begin to retain vast amounts of water our bodies would otherwise flush. No, sorry, Lasix is not going to work here. The fact is it would hurt us! Without the help of special wrapping and pumps to drain the fluid, and further wrapping or compression garments to keep the growing water at bay, we with Lymphedema have the potential to weigh up to one thousand pounds or more (my top weight was 410. I could not figure out why until my diagnosis.)
We celebrate this day because we know our malady and we know we have ways to live with it. We are better know in 2023 because of the passage of The Lymphedema Treatment Act. Thanks to the tireless efforts of LTA President Heather Ferguson and her team across the US, all on Medicare and Medicaid will be eligible for compression garments in 2024. This was a Herculean task, and not once in twelve years did Heather Ferguson, Sarah Bramblett, Bill McCann, Cindy Cronick or any of the hundreds of advocates ever stop seeking visibility for our disease. The fine actress Kathy Bates, who has had Lymphedema for several years, is an advocate who speaks before Congress and the Senate about her Lymphedema and other diseases which are rare which may be eradicated with more research and testing. Kathy works with William Reppicci of LR&EN.
I have lost some of my water (110 pounds of it!) I’m a happy warrior, nearly 67 with two failed back surgeries, a bionic left hip and two full knee replacements under my belt.
My lymphedema came with my second spinal fusion, which was a bust. (thanks, doc.) My endocrinologist, whom I met about five or six years ago in a wheelchair with my husband saw my ankles were about as big as my feet. She said that I had Lymphedema. Dr Jennifer Kirby is one of the good ones. A noted Endocrinologist at the hospital at the University of Virginia, she and my GP Dr Scott Ross (before he relocated to South Carolina) Dr Aditya Sharma, Cardiologist from UVA who handles my Lymphedema and Powell’s Physical Therapy Sherri and Kelly who helped pump my water, showed my husband William how to wrap me, and taught us all about compression five years ago.
I believe If I had not found these people, and started to wear my custom Juzo compression garments for 14 hours every day, I am certain I would weigh 600 pounds as I am wrong this. I would bet money on it.
A doctor I met in passing gave me her opinion on Lymphedema. She compared our bodies to WWII’s Bikini Atoll and we were hit by a nitrogen bomb. So our bodies with #Lymph live with the ravages of that bomb since 1945. But WE DO LIVE and embrace our #WorldLymphedemaDay!
Lymphedema Treatment Act (I am an advocate)
Kathy Bates, LE&RN
Abbe Buck Hann
#BitchyCripple on FB
