| My Lymphedema is primary and started when I was 14. 1983. It started with a slight swelling in my left ankle. I was taken to a dr. who thought it was a blood clot and put me on the blood thinner Coumadin. I was on the drug for almost 2 weeks, when I started getting severe cramps. My mother thought it was just my cycle because I was bleeding and gave me aspirin. For 2 days I stayed in severe pain, on the 3rd. day I got out of the shower walked into our den and fell to the floor.
My mother rushed me to the same Dr. that examined me and wrote a letter to the hospital and told my mother to rush me to the ER right away. On the way I began to vomit severely.
When we arrived my mother gave the dr. the letter and everyone started rushing around, they put me in an exam room and put an IV in my arm. My blood was so thin it went everywhere when they inserted the needle. They came around and put another IV in my other arm. The blood sprayed all over the Dr. and me.
The letter from the Dr. was telling them what he had been giving me for the past few weeks. I had basically over dosed on the Coumadin. I was hemorrhaging and it had gone on so long that I had begun to hemorrhage through my kidneys. They put me in ICU and told my mother to call the rest of our family. They could not stop the bleeding, and the only hope they had was that it would stop on its own in time, but they did not have much hope that I would make it through the night.
The next day, they put me in my own room so family could visit and stay with me. I was on morphine to try to keep me as comfortable as possible until I passed. All of my family came, but I was unconscious most of the time. On the fourth day, the bleeding stopped enough for me to not be in such severe pain. On the fifth day, the doctors said I should recover fully, but that I would now need drug rehab. I was 14 and weighed only about 100 pounds. I had been on morphine day and night for 5 days. I did have some withdrawal problems, but not as bad as the doctors feared.
None of the doctors could address the problem with my left ankle. They had no idea what it was and still kept trying say it was most likely a blood clot. The swelling was noticeable but only if really looked at. With socks, you could not tell at all. I saw a few other doctors, but none could say what it was. We then moved and I basically started living my life and not thinking about it. I had started dancing and was becoming serious about it when my entire leg swelled to 3 times its normal size. I was 15. We went to several doctors, and they kept going back to a blood clot.
We finally came across a doctor who had heard of and new a little about primary lymphedema. He sent us to a doctor who of course, told us there was nothing to be done and sent me home. My whole life changed. I was very popular in high school, but it crushed my self esteem and I had to give up dance. When I was 20 I had my first of 3 debulking operations and even lipo suction on the leg. I could not get any insurance to cover any of it, so I went to the University teaching hospital and basically became a guinea pig for a plastic surgeon. None of it of course worked.
Since then I have had trouble finding doctors with any knowledge of the condition and could not afford treatment from the ones who did. I cannot tell all the ways it has affected my life. From being ashamed to wear dresses and having people stare when they noticed it, to being unable to even find shoes to fit. I live in Fl. and have been to the beach a handful of times. I have no feeling in parts of the leg from the surgeries and was afraid I would get an open wound somehow on the leg, not feel it and then get in the water and get an infection. There is so much more that has been affected by my lymphedema, but we are supposed to only take up one page. It has always been a deformity to me, though no one will call it that.
I feel strongly about this bill, because I feel strongly about anything that will help others not have to go through what I have been though because of this in my life. This is a true problem that needs to be addressed as such. |
