My name is Rann and I am 57 years old. In 1983, at 26 and single, I had a radical hysterectomy to remove a large tumor on my uterus.
50 lymph nodes were removed in my torso from my groin to my breast area. Zero were positive. I had radiation for seven weeks.
I worked full-time and began to notice heaviness, weakness, and fatigue but never thought much about it. I just knew I had been through a lot, that’s all.
Three years later, after changing to a job sitting at a computer all day, things suddenly changed and my right foot and leg began to swell fast. Every day I grew more miserable. My groin and the tops of my legs began to ache. My surgeon had given me a “bikini” cut, which went almost the length of my hips. He gave me muscle relaxers and some pain meds, but said he couldn’t do anything about the swelling.
My dad told his brother about my condition. My uncle worked for the local durable medical supply company, and told me about compression garments and said he thought they would help me. I had done well to that point, but my dad seemed to take what was happening to me very hard. I didn’t make much money, and my dad was out of work, so my uncle paid for the first pair. It would only be in the future that I would come to realize the full impact of the cost, both financially and psychologically, of my condition.
I got fitted for my first pair of custom full-length (panty hose) garments in 1985. I hated them, they were heavy and rough like screen wire. They were hot and so hard to put on. It is hot and humid in Alabama in the summer and I usually didn’t wear regular pantyhose at all, so it was a trying time for me as a young woman.
By 1986, I was wearing them full-time. I had to use Playtex rubber gloves to put them on with, they were so rough that callouses developed on my knuckles. But, the garments did alleviate the pressure inside my legs, but they also added pressure from the outside. My mind was so conflicted and I was torn by a host of emotions that I didn’t even recognize.
The mental toll it had on me at that age, I don’t think I can properly put into words.
I worked for a law firm at that time and wore skirts and pumps. One day I went out to get us lunch in downtown Birmingham, and on my way a little boy who was with his mother, pointed at my big leg and his eyes got real wide. She quickly chided him and I walked on, but I was punched in the gut emotionally.
After that day, I never wore another skirt. My girlfriend, who also worked there, gave me some nice slacks that she didn’t wear any more. I became genius at blending slacks and shoes. I honestly didn’t care so much, but I was sensitive, and I needed the job, and I needed to have peace of mind to do my job. So, that’s the way it was, with few exceptions, unto this day.
In late 1987, I had sepsis for the first time. I had noticed splotches on my abdomen, and by the time my mother drove 45 min. to Birmingham to get me to the hospital, my entire right leg was lobster red. She had to stop on the freeway for me to throw up. My heart was racing and I was in so much pain. I had never been so frightened. The attending at UAB ER had to go search the hospital for another doc who might recognize my symptoms. The nurse kept coming back to take blood because it was curdling before they could get it to the lab. Them not knowing what was wrong was truly frightening because I was getting worse at lightning speed.
In 1988, I almost died from acute septic shock. After that, the Army sent me to Walter Reed for tests, and I was put on Pen-VK, which I still take.
In 31 years, only one insurance company has covered the cost of the garments. I made payments in the early days, and in more recent memory family and friends have helped me get them, or I just do without new ones. I keep old ones on hand, just in case.
I went to Tucson, Arizona in 1994 (I was 37) to one of America’s first lymphedema clinics. I had written a letter to one of my doctors in NJ. He referred me to the National Cancer Institute, and they referred me to the National Lymphedema Network. They sent me a brochure, and on the back their Board of Directors was listed an actual lymphedema specialist, and she was a woman. She was the first one that I had seen. I wrote her and she told me about the new clinic opening that year.
The wrap didn’t help me much, as my horizontal scar blocks much of the lymph flow. But the massage worked very well, and I left there with a huge mental weight lifted off me. It was the first time in twelve years that I felt in control of the condition. Another family member sponsored that trip.
German nationals had come out to train med technicians how to do the Vodder MLD technique. In conversations with them, I learned that there were entire hospitals in Europe dedicated to treating lymphedema. Up to that point in time, education about lymphedema in America was close to non-existent.
No one really understands my affliction. It has been very isolating. I don’t know what I would have done without my family and friends help to buy the garments.
I’ve been on Medicare since 1995, but the garments were not covered. The quality of my life has been much lower because of it. I hope legislation is passed, not only for myself, but for the younger patients, because I know how they feel and what they are going through.
I am truly grateful to all working to get The Lymphedema Treatment Act put into legislation. I wrote my reps and the President today to pass it, and I truly hope and pray it is successful.
