My name is Ruth. There are several birth defects among my siblings which may or may not be related to our family's Primary Lymphedema (LE). I was born with a major heart condition. My maternal grandfather and both of his whole brothers had LE in their legs since childhood or young adulthood. Neither of my grandfather's half-brothers nor his half-sister had it and there is no definite record of LE any further back in the family history. My mother has had LE in her legs since an injury at age eight. When I was eight my younger sister, age five at the time, developed LE in one leg. There was not much known about our disease. We had never seen a case outside our family and neither had our doctors.
Several times a year my mother would become deathly ill from cellulitis. From age seven I got used to running the house and taking care of mom. As far back as I can remember my legs had ached terribly from time to time, especially when I sat or stood still or walked for a long time. I had always thought of LE as "their" disease, until it hit me.
When I was fourteen we noticed that my ankles were swollen. We soon found out that an aneurysm had developed near my heart. My hands were also slightly swollen. My left foot and right hand were the most affected. After my third open heart surgery (age fourteen) my feet were down some and my hands had returned to normal. Two years later my sister's other leg began swelling and became worse than the first one. My legs continued to swell and get worse. When I was nineteen I had a pain in my right arm. We believed I had a misalignment in my upper back. Later in the year the pain changed. It felt like I had pulled a muscle in my upper arm. This pain continued and worsened for several weeks. One day a red line showed up where the pain was, and the arm was swollen and hot. The line ran along the inside of my arm from the armpit to the wrist. I went to the doctor for antibiotics. Eventually the pain and redness dissipated, but the swelling remained and the pain was replaced with an almost constant ache in the shoulder.
When I was twenty-one we discovered Complete Decongestive Therapy (CDT) including Manual Lymph Drainage (MLD). Thank God we got a qualified therapist. Mom went first, then my sister, and I went toward the end of the year. It did help some. We were given special compression bandages to use at night and compression garments for the day. We were taught home management techniques. I was in a lot of pain during the weeks of therapy. I was always very tired and thirsty. It is important to get enough water, especially with LE. After I started home management these symptoms slowly subsided.
The emotional strain of having three limbs bound up and generally unusable most of the time was also terrible. It was worst with the arm, because I could still walk a little in the bandages, but I could hardly even bend my elbow or fingers. After I began home management and the pain got better, I gained more control of my limbs and the strain was less. I had begun coping and was doing better. My left hand had swelled a little but always went back down. Just days after my twenty-second birthday I felt a familiar pain in my left arm. This wasn't a pulled muscle, but I avoided it, hoping it would get better, as it had before. Then the red line, fever, and swelling appeared, just as in the right arm. We immediately went to the doctor for antibiotics. Therapy couldn't be done while there was infection. The doctor took one look at the red line and said, "this is infection," well duh!! I had seen it every year in my mother and several times in myself. I don't trust most doctors, especially where LE is concerned.
The emotional strain was worse with the left arm. I had lost all four of my limbs to this disease and no telling what was next. It took me many months to learn to wrap both arms by myself. Since there were three of us in the house who did home management we developed our own names for the bandages and foam pieces we used. A kidney is a kidney-shaped piece of foam used on the ankles and the palm of the hands. A finger, or toe, is a small gauze bandage used on the fingers and toes. A foot is the size bandage used on the foot, etc. I started making jokes at home. "Who stole my foot?" "I'm missing a kidney," etc.
I was very angry for a long time, and I still am sometimes when it is all too much work. Most of my time is taken up either with massage or unwrapping, re-rolling, wrapping, and washing bandages. For the most part, however, I am over the anger and frustration and have settled LE management into my daily routine. I still have the ache in my arms and legs sometimes.
Besides the family support group I am part of an online support group and my church. Some of my friends use therapy, some use a pump. Most of us use compression garments. Because this condition is different in each person, so is the treatment. God has blessed me so much in helping me learn to survive this disease and giving me such friends who are survivors. I pray He will bless you all as well. Ruth
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