Living with Leg Lymphedema

Lymphedema, to put it simply, is swelling, usually in the arms or legs, which is not caused by water retention. Rather, it is drainage of lymph from the trunk, where it is supposed to be. There are several different causes of it, dependent in part on where the lymph winds up. Mine is primarily in one leg, although the other leg is slightly swollen. Heredity is one factor in leg lymphedema, and I seem to have lucked out that way.

Apparently, I have lived with lymphedema for most of my life. The good news is that it isn’t so bad for a long time and, if caught early enough, is easily and comfortably treatable. The bad news is that, when it decides to get really active, it is pretty awful until it is properly treated. In addition, according to my vascular surgeon, the traditional surgical treatment isn’t very effective, and my therapist said that the more effective therapy (or, at least the one she performs) is only about 10 years old and is not widely known among doctors.

My father’s two sisters had legs like tree trunks. Both were very short and very fat. Various family members occasionally would comment on their legs while warning me against gaining weight. By the time I was 11 years old, my ankles were slightly swollen, and my mother wouldn’t let me wear bobby socks (knee-high socks that were fashionable for girls to fold down to their ankles) because, she said, my ankles were too fat, and the socks would make them look even fatter.

My doctors never commented on my ankles, and I didn’t see any evidence of ankle bones until I was in my 40s, when a big toe turned dark following a slight injury. My doctor prescribed antibiotics and told me to go to bed with my foot elevated for a week. Half-way through that week, my ankle bones re-appeared. Mother happened to be visiting me then, and for the first time she realized my ankles weren’t really fat. This, of course, was a major morale builder for me, but it lasted only for a couple of days after my toe had healed.

In my early 60s, my ankles got bigger, and my legs swelled from mid-calf down to my ankles, creating a crease at the juncture of the two. I had moved to Boston, and my new doctor put me on a diuretic, which didn’t do anything for it. Then hard little white bubbles appeared on my shins, and I went to a dermatologist. He gave me several cortisone shots in the bubbles, which did nothing for me. After six weeks, he decided I had elephantiasis. Lovely, no? My family doctor, after a few questions, doubted that diagnosis. However, she kept me on the diuretics. If she made a diagnosis, she didn’t start a new treatment or refer me to a specialist.

So I was stuck with really ugly legs. On the bright side, floor-length dresses were fashionable, so I didn’t give further thought to the matter. Alas, long dresses more or less went out of style. I had retired back in Virginia by then, and with the change in my lifestyle, came, quite by accident, a headhunter who talked me into taking a temporary job for only 20 hours a week.

Wanting to miss the D.C. area rush-hour traffic, I elected to work 5 hours a day, 4 days a week, from 10:00 a.m. to 3:00 p.m. with no lunch break. I took an apple, banana, or orange with me for a snack. By the time I got home, it was time to start supper. And, without actually trying, I peeled off enough pounds to go down a couple of sizes. Up until this point in my life, I had never worn slacks or pants suits, but most of the women at work were wearing them. Aha, I found a new solution for hiding my ugly legs, and I liked the way I appeared in them.

Meanwhile, about three years after the bubbles appeared, they settled down into what appeared to be pink scar tissue. I asked my doctor about them. He referred me to a dermatologist. That doctor said he had no idea what was causing this, but if the area ever started to ooze, it was a serious matter and so see him immediately. It never oozed. So life went on, and I more or less forgot about how my legs looked – after all, the pants covered the problem.

That is, until almost overnight in early October, my left leg from the knee down and my foot swelled up to the point that I couldn’t get that leg into any of my pants, and my left shoe hurt like fury. I was just shy of 70 by then. I went back to my doctor, wearing a stretched-out pair of shoes that I had saved for garden work and a 10 year old floor-length dress that hung on me like a bag. For the first time, I was ashamed to be seen. He took me off the light diuretic, prescribed a really strong one, and told me, laughing, that I was going to pee like crazy and come back in a month.

A month later, my left foot and leg had gotten bigger. By then, I couldn’t tie my left shoe, and the shoe tongue stuck straight up. The doctor doubled the dose of the diuretic. Even if my clothes and shoes had been acceptable, I was afraid to leave the house because of the diuretic. This kept up for six months, and my left leg kept on getting bigger. It felt like it weighed a ton. I could barely stuff my left foot in the left garden shoe, and I couldn’t find a ready-made shoe that was wide enough. Worse, I could barely hobble fast enough to get to a bathroom at home. The doctor finally referred me to a vascular surgeon.

It took two more weeks to see the vascular surgeon. After testing, he diagnosed lymphedema and referred me for therapy. He also said that I didn’t need such a strong diuretic. I called my family doctor but had to speak to his nurse. I told her what the vascular doctor had said and asked if he would give me a new prescription for a less aggressive diuretic. She called back the next day and said no.

I also called the recommended therapist. I got an intake appointment two weeks later. My legs were measured, questions were asked, and I was told to go to a place that sold pressure boots and stockings. The boots had to be ordered. I was to call the therapy office when the boots arrived, at which time they would schedule me at the earliest date when they had five to six weeks of daily appointments available. It took two weeks to get the boots and another four week wait for my first scheduled therapy visit in mid-April. My left calf had quit swelling by then and, while it was by no means tree trunk size, it was pretty big.

During the long period from the sudden enlargement of my leg until about the time I started my therapy, I was sick with a cold or with flu-like symptoms about every third week. I had rarely been ill very much before that fall and winter. Because of my clothing and shoe problems, I failed to get a flu shot that year and blamed the lack of the flu shot for being sick so much. I learned, during the therapy, that the lymph system is the body’s defense against infections.

Actually, the therapy was rather pleasant. It consisted of a gentle sort of massage designed to push the lymph back to my trunk, where it belonged. When the first therapy session for the left leg was over, my leg was visibly smaller. I pulled on one of my “boots,” which were made of a soft fabric which had been quilted with some sort of elastic-like stuffing. Then, the therapist tightly wrapped a bandage around the entire boot. With the boot and bandage, my left leg did approach tree trunk size. I was given a pair of hospital sandals that closed with Velcro.

I had driven myself to the therapist’s office in a stick shift car with a floor clutch. I couldn’t raise my left leg to the clutch. I had to push the seat back and hand-lift the leg to it. I couldn’t take my foot off of it. I slowly drove out of the parking garage with the clutch partially engaged. When I had to stop the car, my right leg could barely get that foot on the brake because of the extra room the left leg and boot required. I drove home very slowly in absolute terror. On the only two blocks of a busy street that I had to navigate in order to get home, three drivers honked at me and gave me the universal gesture of disrespect when I got into the left lane to make a turn. When I got home, I engaged a driver for the remainder of my therapy visits.

After a few days, my slightly swollen right leg also began its therapy and was booted and bandaged. Wearing only one hospital sandal was awkward, but wearing two was sheer misery. The open toed, rubber-soled little monsters seemed to try to trip me by catching on everything, especially when I was going up the stairs at home. I had to wear the boots at all times except when in the shower, and I had to re-wrap the bandages before going to my therapy appointment. I had to wear those sandals to keep the fabric boots from wearing out and from getting dirty. Also, the bandaging after my shower was particularly hard for me to do, and for the life of me, I couldn’t get the end of the bandages to stay taped shut. (The therapist didn’t want to use the metal clips like those used on pressure bandages for things like sprained ankles because of the sharp claws used to hold the fabric.)

To the therapist’s and my surprise, the therapy only took a little over a week to reduce both of my legs to a normal size. My left leg remains a little larger than the right, but not noticeably so. My ankles are smaller than they were before, but I still can’t discern my ankle bones. However, I was lucky that I was sent to and received therapy when my lymphedema was still in its early stage: that is, it had not settled permanently in my legs.

I was fitted for pressure stockings, which I have to wear at all times except when I shower and when I am in bed. I wear the boots (no more bandages) to bed. My life has returned to normal. I can wear my slacks and shoes. The vascular surgeon told me to quit taking the diuretic and informed my family doctor of this in a letter. I don’t much like sleeping in the boots because they make turning over at night a bit of a challenge, but I’ve learned to live with it. About the only remaining problems that are associated with my lymphedema are that I may have to return for more therapy should my legs try to swell up again, and the stockings and boots are expensive, are not covered by my insurance, and only last a few months. I can live with that.