I have had lymphedema in my left leg for the past 17 years. Originally I had injured my left calf by running into a redwood chaise lounge and it did not bleed. This happened in 1978. I was a full-time bank teller, standing most of the time. My foot started burning and cramping and I just thought it was from the standing.
About 6 months later I went to work for a finance company and was sitting most of the time. My ankle started swelling and aching. I finally decided to go to the doctor who thought it was gout. He put me in the hospital and said that I would be admitted for one week which turned into two.
They did a venogram and said that it was blood clots and that I had them in both legs. They put me on coumadin and in a Jobst stocking. The man who was injecting the dye for the venogram missed the vein and I felt a burning sensation. I told him about it and he just said it was okay and started over. After I was on the coumadin and had to keep going for proteins, my calf and ankle started going down.
In June of 1982, we went dancing and I heard a snap in my left groin area. I didn't think anything about it at the time, since I was able to walk. Well, a month later I found out that I was pregnant with my second child and that there would be 16 years difference in their ages. I immediately went off the coumadin. After I was about 3 months pregnant my left foot swelled around my low-cut shoe and started getting bigger in the calf. I just thought it was due to the pregnancy. My obstetrician was really upset about it and I told him that it probably would go down after I had the baby. While I was pregnant, my blood pressure got really high and I had the beginnings of gestational diabetes. I watched what I ate, lost 5 pounds and my blood glucose and blood pressure went down.
The doctor kept watching me carefully and wanted me to quit my job in January. I kept working until the end of February. The doctor finally did a stress test on the baby March 4. I was due the end of March. On March 6 he admitted me and on March 7 tried to induce labor. Nothing happened. He was going to try again the next day, but he had an emergency C-section so he cancelled until the next day. Then finally on Wednesday, March 9, he took my son by an emergency C-section. He was jaundiced and was put in an incubator, even though he weighed 8 lbs 14oz. We didn't go home until he was a week old and then I was put on coumadin again and wore the Jobst stocking.
About 6 months later, my leg started getting bigger and felt very mushy. If I knelt down to scrub the kitchen floor I would have an indention in my left calf. Finally, I went back to my specialist and he put me in the hospital. He said that I probably would be in the hospital for two weeks. As usual it went to five weeks.
After I was there two weeks, they decided it might be lymphedema and they sent me to another local hospital for dye tests. They put needles between my toes and shot blue dye in them and I had to walk around for about 1/2 hour. Then they had me lie on a table with my feet flat and knees bent. They shot novocaine in the top of my left foot, so that it would numb and then they could cut open and pull the lymphatic threads to see where the damage was in my left leg. Well I was so lucky as to be one of the one in a million whose threads would break and they couldn't tell where the problem was.
They sent me back to the other hospital, where in a few days I got hives all over my body. It was a reaction to the blue dyes. I was told never to have that test or any other test done with blue dyes. I stayed in the hospital for five weeks and found out that it was lymphedema and that I would have to use a Jobst extremity pump and wear a Jobst panty-hose garment the rest of my life. Since there was no cure I was told that I would have to learn to live with it. But by the time I would turn 50 would have to have my left leg amputated. I was 36 years old at the time and thought surely by that time there would be a cure for this condition.
Well the years went by so fast, and my leg kept swelling around the ankle and the crease kept getting bigger and aching more. We had moved several times in the past five years due to my husband's new job and promotion, and I just kept living from day to day with it.
In 1997, a friend of mine in Pittsburgh, was talking to a friend of hers who had lymphedema for about 1 1/2 years. She found out about the manual drainage therapy and went to New Jersey. Aafter she was there about five weeks her leg went back down almost to normal. She said that they were doing it in Pittsburgh then, so I contacted Magee Women's Hospital and they were doing it there. We have been living in Cheyenne, Wyoming since 1995 and the closest therapy center was on the other side of Denver, which was over 100 miles, and that I would have to stay at a motel for the 5 weeks.
Since we had relatives living in Pittsburgh, I went back in May of 1997 and had the treatment done. After three days I noticed my foot going down and after the five weeks, I was able to wear a tie shoe, since not being able to wear one since my second son was born. I lost a total of two liters of protein. I learned how to wrap my leg with the compression bandages and do the exercises morning and at night.
I was so happy that my foot and ankle went down, but the calf still was swollen. Since I was one of the worst they had ever seen, it was a miracle that I lost that.
Everything was going great until last summer. I started getting blurry vision and started aching all over my body. I just thought I had the flu. I went to the eye doctor to get new glasses since they were almost two years old. I have been a diabetic since 1991 and was taking glyburide and glucophage for it. The eye doctor told me that she couldn't give me a prescription, because she would have to give four different ones, and that my blood glucose must be very high.
I put off calling the doctor since I was to go on vacation in the next two weeks and was to see my doctor the end of the month. Well I got a fever that went up to 102 in the morning and at night and during rest of the time was below normal. I started aching all over my body and it was never in the same place. Then I got a rash on my good leg and both arms, that looked like rice krispies. It would come and go. Finally after about a week I went to the doctor around 11:30 AM. Naturally, I didn't have the fever or the rash. He said we still could go on vacation.
That evening, which was a Friday, I got the fever and rash again. The next day I could hardly move and get up out of a chair. By Sunday night I could not turn over in bed and by Monday morning, I could not open my hands that were all swollen and clenched together. We were to go on vacation the day before. I went back to my doctor that afternoon who immediately put me in the hospital. My blood glucose was 457 and I was so out of it, that I had blurry vision and felt like I was out of my body watching everyone. I was so dehydrated that they put me on intravenous medications and it took three more days before they called an arthritis specialist in to see me. He looked at my hands and rash, and naturally at the time he was in I didn't have the fever. He said it was one of three things, but he didn't want to make a diagnosis until the next day.
He came in and said it was Still's Disease, which is a form of Adult Juvenile Rheumatoid Arthritis. He put me on 20mg of prednisone twice a day. After 1 1/2 days, my hands went back down to normal. My rash and fever went away by the third day. I was in the hospital for five days and left having to be on insulin the rest of my life.
I was finally taken off the prednisone in February, but I gained over 45 pounds, had acne all over my face and my left leg swelled up again. I can only fit in one pair of shoes that are low cut and use a shoe horn. We had gotten new insurance coverage the week before I went into the hospital and they will not cover the manual drainage therapy, since they said the lymphedema was pre-existing.
Last week, I had to have laser surgery on my left eye, from the prednisone and arthritis causing me to have diabetic retinopathy. I hope I will be able to get this leg back down after I lose this excess weight.
I probably went overboard in writing this, but wanted to get across the frustrations of having lymphedema with other chronic diseases. I was so tired of hearing that I had to learn to live with it. Having the manual drainage therapy was a Godsend. I hope that if I don't go down, that I'll be able to have the therapy done again.
Thanks for letting me sound off.
Carol