At first dialysis was extremely hard to understand and to handle, emotionally and physically. Lupus and dialysis is two diseases within one body. I was always tired, sad, not able to eat, no working, not able to as physical as i had been before dialysis. Having Lupus was hard and dialysis just made things unbarable. I was never sure if it was my lupus or dialysis that was bothering me at a paticular day. I also had a lot of problems with dialysis. I spent two and a half years on peritoneal dialysis. I had so many infections it made it impossible to stay on that type of dialysis. Then, I had a surgery and started a different type of dialysis. Hemodialysis, i had to go to the hospital three times a week for about four hours each time. The problem with this type of dialysis is that you cannoy eat anythibg you want. Most be on a low sodium, low fluids, low phospherous, potassium and low protein diet. You most regulate your diet well, otherwise you will get sick. My problem was that my veins were so tiny that they would constantly clot and a new place was to be found. Being that there are limited places on the body for dialysis some places were used over and over with just as many surgerys and recoverys and hospital stays. I had about six or seven different surgerys before my coma on december 1999. At the time i had been on dialysis for seven years. To this day no one knows what happened to me. It was either Lupus or the menengitious. i was in a coma in icu for about two months. My Lupus was active and causing more trouble then usual. When i finally opened my eyes from the coma, my troubles had gotten much much worse. I did not remember anything that had taken place in the past two months.. I had no idea i was in a coma. Actually all i could think was that i most of got a kideny transplant. I could not ask anyone because ,i could not speak, eat, use my hands or arms, or move at all. My hands and arms were twisted and deformed. My legs,had foot drop( when feet are not moved for a long period they drop down ) and twisted as well. My muscles had pretty much melted and had no strength at all. For a while everyone thought i would be a vegetable. i was extremely confused. i remembered faces but just confused. Not knowing what has happened, what day it was, how long i had been there. Doctors would ask me questions but i had no answers. I was able to blink once for yes and two for no or maybe the other way around. Being changed in bed, showered in bed, on pampers, sore and extreme pain . With a feeding tub and all other tubes. The doctors were happy i did not have nerve damage. Which, meant things could change for the better. I was in physical therapy for seven ot eight months. i started to talk, only a few words at a time but i would not walk until further surgerys. Lupus was active and causing problems with my knees. I had to drainthe fluid from my knees a couple of times. A very painful process. I do not recommend, unless a last choice. It took so so long to be able and sit in a wheelchair. i still cannot believe i got through it all.
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