I wasn’t officially diagnosed with secondary lymphedema until March of 2017 but my primary care physician (PCP) had made an offhanded comment about the lymphedema in my legs a few years prior to that. I had never heard the word before and I think I didn’t want to acknowledge it at the time, which I regret, but regrets are wasted time and energy.
I underwent abdominal surgery for perforated intestines in 1996 which resulted in my abdominal lymph nodes being scarred and damaged which in turn overwhelmed my groin nodes. The lymphedema had remained “dormant,” so to speak, for sixteen years but started a slow progression in 2012 until finally diagnosed in 2017. At first I thought it was just normal swelling because of the heat and humidity of our area. That’s when my physician started me on diuretics. For a while they helped pull the fluid from my feet but then I started having the heavy leg sensation, better known as “Heavy Leg Syndrome.” My lower legs started swelling at which time the rheumatologist sent me for physical therapy (PT) where my initial leg wrappings began. After two weeks of daily PT appointments my insurance company would no longer cover the treatment. In addition, the physical therapist kept telling me I did not have lymphedema (LE)
For two years I would wrap when the swelling caused discomfort or wouldn’t go down overnight. After deciding that I needed to advocate for myself, I started browsing the Internet and found the lymphedema support group on the Inspire website (www.inspire.com).
It was there that I read about LE treatment with a CLT (Certified Lymphedema Therapist). I asked my PCP to send a referral for lymphedema therapy and then began a six week (5 days a week) treatment course of reduction wraps and MLD (manual lymphatic drainage) massage which moves the lymphatic fluid to my working chest nodes. It was during my therapy that I learned diuretics are harmful in treating LE and since I wasn’t taking them for any other health issues, I threw them out. At the fifth week of therapy, measurements were taken and custom compression garments were ordered.
I was just starting my therapy when the lack of insurance covering my therapy needs reared its ugly head. Insurance covered 80% of the therapy sessions, the CLT, and the stretch compression bandages which were such a struggle to keep up causing us to rewrap throughout the day and overnight. I decided instead to wear Velcro reduction wraps which my insurance would not cover. Once the custom flat knit compression garments were ordered I had to cover that expense as well and they need to be replaced every six months. Make no mistake, LE is a very expensive and time consuming disease to manage on a daily basis.
My lymphedema is at Stage II of three stages and I’m blessed to have had no bouts of leaking lymphatic fluid, infections, or cellulitis. Daily donning of compression garments takes both my husband and I to put on every morning. I wear 30-40 mm/Hg flat knit compression thigh highs 14-16 hours each day. I am able to sleep without compression and pray that continues long term.
Bilateral LE in both legs has completely altered my daily life. Every day is a struggle to accomplish the simplest of daily tasks not to mention the emotional, humiliating, and embarrassing aspects of the disease. The heavy leg sensation and pain I experience is exhausting and makes mobility very difficult. Despite the challenges of this disease, I manage it to the best of my ability and knowledge. I pray every day for a cure so that I as well as others may someday enjoy life as we once knew it.
*I must say I could not manage this disease without the love and support of my husband whose kindness, devotion, and compassion for me knows no boundaries. Thank you to the love of my life! I am humbled by the many blessings in my life.
Lynn Steiner
Gloucester, Virginia