Randi Smith

My name is Randi Smith and I am from a small town in Alberta, Canada and I am a NF survivor. On Monday June 12, 2006, I had what I thought to be a nasty bout of the flu. Nausea, sweats vomiting and shortness of breath to name a few. By Wednesday evening I was vomiting every hour and could not catch my breath in between. I woke my husband and told him I think we better go to emergency because I thought I was having a heart attack. We drove the 30 kilometers to our local hospital and I was admitted immediately. The original diagnosis was diabetic acid ketosis and after a week things had stabilized except for a persisting high temperature. and a small lesion on the inside of my left groin. On Thursday, June 21, 2006 I was told I would be transferring me by ambulance to a major city's hospital ( 3 hours away by car) for further testing. I left my small city at 3:00 pm that afternoon. I was fully awake and told my husband to finish his work week and I would see him Friday night and probably come home with him that Sunday. The next day I fully remember is August 27, 2006. By 7:00 pm that night the hospital called my husband and told him he needed to come right now because I probably would not live. All they promised was to keep me alive until he arrived. I was only given a 30% chance of surviving and less than 5% chance I would keep my left leg. The NF had spread down my leg to the knee, across my back and up to my shoulder blades. Truth be told I should not have survived. The doctors have told us many times that there is no medical reason I came through this as well as I have. I had a central line, arterial line and 8 different IV lines. I also had to have a tracheotomy. If they had kept me at the local hospital near my home I would not have survived the night. After 16 surgeries I am happy to say that I have my leg though severely damaged and extreme scarring from several skin grafting sites and skin donor sites. In total I spent 6 months in hospital-2 1/2 months in the Intensive Care Unit and then transferred to a Burn Unit where most of my major wounds were dressed with a Wound Vac. The wounds were packed with yards of sponge like material and hooked up to a suction pump to remove the fluid and help with the healing.This dressing was changed every 3 days and each time was like a surgery. I was put under each time. In September, 2006 I was transferred to a plastics ward to keep up with the wound vac and dressing changes. At the end of October, 2006 I was finally transferred to a rehabilitation hospital where I was able to get the help to learn how to walk again. On Dec 6, 2006 I was able to come home. Once home I was only able to use a walker and wheelchair. By March I was walking with only the use of a cane and in April I had my last reconstructive surgery. Today is February 7, 2008. My life has changed so much in the last year. I can now almost do everything the way I used to. Walking will always be an issue but I am now able to drive and am back to work part-time. I am so grateful for the support of my family and friends for without them I do believe I would not have survived. I would love to hear from anyone who has lived through this horrible disease.