When I was in my early 20s (around 1987), my left leg began to swell for no reason. Within months my calf was as big as my thigh and my whole leg was tight from fluid. Doctors put me in a stocking and had me exercise. Days into the “therapy” my stomach began to swell and I suddenly looked pregnant. I stopped the exercise therapy, but the swelling did not go away. I had to quit my job and go on disability. My doctor, an internal medicine specialist, was baffled. He referred me to other doctors. A couple of the doctors told me I was fat and needed to lose weight, but I was NOT FAT. I weighed less than 135 and was 5’3”. My leg was so painful and the doctors thought I was JUST FAT??? Eventually, my doctor was just as fed up as I was, and stopped referring me to others. He began to research my case himself.
First, my doctor tried to drain the leg and abdomen, but this didn’t seem to help much. Next, he tried sclerosis of the lymph pockets in the right side of my abdomen. They used betadine, which was very painful and made me sick. They thought they could push it in and suck it out, but it leaked out of the cyst and into my abdomen. They were very nervous about not being able to retrieve all the betadine and I felt so ill afterward. Not long after that, I had surgery to take out the lymph filled pockets and place drains in the leg, and at the same time they went into my abdomen to remove a large softball size lymph cyst and pack fatty tissue around the lymph junction in the lower abdomen to try to “plug the leak.”
I now had a wound from my just below my sternum to my bellybutton and another on my left leg from my groin more than half way down to my knee. This is about the time I first heard the word lymphangiomatosis. I was sent home with drains coming out everywhere. The leg continued to swell and spew lymph fluid out the drains. I was monitored for anemia. But the surgery seemed to help some, as the swelling in my stomach was going away.
Eventually, I was told that I have small pea sized lymph cysts all over, especially on my intestines, my liver, and near my heart. Later that year, my side started to hurt and I came down with a bad fever. I passed out before they could get me to the CT. One of the cysts was wrapped around my ureter and was cutting circulation to my right kidney (right where I remember the betadine being injected). They saved the kidney, but my leg was still completing debilitating. I had two more operations after that on the leg to remove tissue and replace drain tubes. I got pretty good at hiding the tubes. I cut holes in my clothing so I could pull the tubes out the side and hide them in my purse.
I started college and began praying for a miracle. I was studying to be a teacher, and I promised God that I would make a difference in the world if he would save me. Then, after having tubes in my leg for years, I got an infection. They split the leg open, cleaned out the infection, and left it to heal from the inside out. It took more than three months for the wound to close. The scar actually closed up something and the swelling in the leg went way down. It still swelled, but it almost looked like the other leg.
A couple years went by. Suddenly, my hips started to hurt. I was sent for a routine x-ray. The technician came out from behind the wall with an ashen look. “How much pain are you in?” she asked as tears backed up in her eyes. She couldn’t hide the fear. I was told that I had lesions all over my hips, pelvis, and lower sacrum that looked like bone cancer and I needed to be seen by a specialist right away. It was not bone cancer. It was bone loss from the lymph cysts resting against the bone. They said the cysts had stopped growing and were no longer continuing to damage my bone, but the damage was permanent and I may need a hip replacement when I am older. I felt lucky.
When I was 29, I got married and then three months later got pregnant. I loved being pregnant and exercised every day, but I went into preterm labor two months early and was put on bed rest until the end of my term. A cyst on my ovary became extremely painful as I got bigger. My daughter was born at full term by c-section, since the bones in my pelvis would not allow a natural birth, and the doctor took a baseball sized cyst off my left ovary. I was two years away from graduating with a teaching degree, I had a beautiful baby girl, and I felt great. I was nursing and eating like it. (I would later learn that I should have been on a low fat diet.)
When my daughter was 7 months old, my stomach began to hurt. A lymph cyst had wrapped around my small intestine and blocked it. I had to have a bowel resection. They took out 10 inches of my small intestine. I couldn’t eat or drink or even have ice chips touch my tongue for 6 weeks. The worst part was that they wouldn’t let my baby in to see me. It was so hard. Up till now, all of my procedures and operations were done in Albuquerque, New Mexico. Now, my doctor was beginning to learn quite a bit about lymphangiomatosis, but he wanted another opinion. In the spring of 1997, I traveled to the Mayo clinic in Rochester, Minnesota. They ran a ton of tests and did a bone biopsy which was very painful. They didn’t get the sample they wanted, so the tests were inconclusive, but my diagnosis was confirmed as lymphangiomatosis.
I returned home and continued taking care of my daughter, planning to return to college when she was a year old. But then, during the summer of 1997, my husband died. I was on disability, survivor’s benefits, and state programs for the poor. I put off college for another year so I could heal inside and out. My deceased husband’s family came to my rescue, coming to our house and taking care of both of us for the next few years as I struggled to pull it together.
In 1998, with the help of DVR (Division for Vocational Rehabilitation), I went back to college. I graduated, with the help of my daughter’s grandparents, on disability as a single parent in 2000 with a 4.0 GPA, awards for outstanding excellence in methodology, and my name in Who’s Who. I started substitute teaching to build up my endurance for a full day of work. I was hired as a permanent substitute because of my skills working with children with developmental and physical delays. After working for a year as a substitute, I was ready for full time. My school asked me to go back to college to get my degree for Special Education. I was hired on a teaching waiver and assigned to an ISP (Intensive Support Program) classroom to teach kindergarteners with severe and profound disabilities. I knew that my promise to God was being redeemed. It was awe inspiring. I had to teach during the day, go to night college for my Master’s degree, and take care of my daughter. She was now old enough to go to kindergarten, so she started school the year I began teaching full time and going to night class. It was exhausting and stressful. Her grandparents helped me enormously and I could not have done it without their help.
The Mayo clinic recommended going into early menopause, so I had a procedure to induce menopause in 2003. This may have helped. Not long after menopause set in, my leg began to feel less bothersome and I began wearing my stocking less and less. I received my MA in Multicultural Special Education in 2005 and bought a house. I remarried in 2006 and began to feel like my whole life was still ahead of me. As time went on, I lost touch with my doctors and stopped wearing a stocking altogether. The leg still continues to swell a little and hurt sometimes, especially if I sit for long periods.
In August of 2014 I started high intensity workouts. I was 160 pounds, getting older, and needed help to get back into shape. I knew not to stress the leg, so I got a light compression stocking for workouts. I lost 25 pounds and feel great, but now that I am older (turning 49 in July), my veins in my left leg are bad. Even while wearing a stocking for workouts, my leg feels heavy and slow. I have three bulging veins in the calf and the veins in my calf and thigh pull, burn, and itch. I was recommended for venous closure and was given a higher compression stocking for the veins to wear while working out, but the high compression pushed lymph into my left groin and buttock after a couple days. I haven’t had any serious lymph swelling for 8-10 years, so this was scary.
We are going to try a flat knit with lighter compression, but I would like to close the veins so I don’t need a stocking. The stocking seems to make me dependent on it and it pushes fluid around into places where there was no swelling. My vein doctor has never heard of lymphangiomatosis and he doesn’t know if venous closure will aggravate the lymph system or not.