Kelly Lawson

I feel this disease does not get the NATIONAL ATTENTION it DEMANDS. This is a horrible way to die and even if you get lucky, as I have, and manage to escape with your life, you are going to be cripple in some awful manner. All the numbers I have seen makes it sound as if it's real hard to contract this horrible illness. After talking to my visiting nurses about other people they have known with 'NF" it seems that my area of Illinois is a hot spot with 6 cases that I can find. I am so frightened that I might get "re-infected" that I run to the VA hospital quite often to have them run the "BLOOD CULTURES" that they need to diagnose "NF". And what is so shocking is that no one seems to know this. If you take anything away from reading this, please let it be this. If you have some pain where it shouldn't be …RUN THE BLOOD CULTURES. Don't let these idiots in emergency rooms give you pain pills and send you away. You have to be sure you don't have NF. It took 10 days of misdiagnosis before I passed out from septic shock. I often wonder how different things would have been if I had been correctly diagnosed. They told Jean to write my obituary and make funeral arrangements. They told her I wasn't going to make it. But Jean didn't take that for an option. When my kidneys shut down, she demanded that they get a kidney specialist to get them working again. I was on dialysis for a while and on a ventilator twice for a week at a time. Thankfully I don't remember any of this. I don't have any memory for the 1st six weeks. I think I fall into the category of "unknown origins" of the disease. I had just returned from a trip to California. I had no injuries to speak about. I was working on my computer and stood up. I noticed a small pain in my hip. The next day the pain was more noticeable but not a problem. The third day I went to emergency and they gave me pain pills. I went to the emergency room 3 times. They never took blood cultures so they didn't figure out what was wrong with me. That is until I fell out of a Ford Expedition driven by my love and life savoir Jean Deininger. The last thing I remember was signing a surgical release at the VA hospital in Iowa City, Iowa and I passed out. I went into septic shock and all my organs began to shut down. They took me into surgery and removed all the decaying tissue. My kidneys failed and I think I had some sort of stroke and that's what happened to my vision but that is the only thing that makes sense to me. The doctors really don't have a reason why my vision is gone I woke up six weeks later. The first thing I realized was that I could not longer see out of my left eye. I was cut open from above my right hip all the way down to my foot. I was told I had NF. The doctors asked me all these questions about where I had been and what I had been doing to contract this horrible infection. I didn't have anything but some swelling. I had no discoloration to mention of. I was at a "teaching hospital", so I never really had "one" doctor to name. The experience was so awful. In the mornings the doctor and this mob of students would come into my room to mess with me. I felt like a lab rat or a science project in some cheap horror film. I was so afraid of these people that were caring for me I wanted out of there at any cost. They finally moved me to a rehab hospital for a month. I was there about a month before they sent me home on September 8th, 2006. After I got home I started having problems with my stomach. And to make a long story short. I had a 10 section of my small intestine enlarge to the size of softball. This made everything I would eat stop. I fought this until the end of November. I went back into the hospital until January 10, 2007 for the stomach surgery I needed to fix my digestive system. Today I weigh 141. And I can't seem to put much weight on. I have lost feeling in both of my feet and I can barely see anymore. I am worried that my stomach problems will return but so far so good. I am trying to get disability but it hasn't been approved yet. It's time for an attorney. So I have been getting better now since I had the stomach surgery. I can't help looking over my shoulder now. I am so afraid of NF and now I have digestive issue that I have to watch. I have included pictures. I hope everyone is well and I pray that this horror is ended someday for everyone. God Bless Us All.