Bob Wiley

My name is Bob and I've always been pretty happy go lucky about life. Traveled quite a bit, broken my neck twice, one arm, an ankle and two ribs I've had diabetes for about 24 years so I thought I'd pretty much seen it all. Up to this point I had had no surgeries whatsoever. One day at work, I stepped off of a foot stool and twisted my right knee. It popped loudly, but at my age (55) everything pops, so I thought nothing about it. That night my leg was so stiff that I could not drive because I could not bend my knee. The next morning I just sat in a chair and watched TV hoping the pain would just go away. That entire week I refused to see a doctor, I don't like hospitals and always felt that I could pretty much handle anything that came along. I awoke in the middle of the night three or four days into this with a temp of 103 degrees. My wife called 911. They strongly advised me to go by ambulance to the local hospital which I promptly refused, promising to see my primary care physician in the morning. Since my doctor could not see me immediately, my wife insisted I go to the emergency room. I went and was diagnosed as having an internal knee derangement. They gave me something for the pain, which did not even begin to help, and sent me home. Two days later I was in such bad condition, my wife called my doctor and informed him that I was coming in to see him regardless. By 6:00 that evening, I was transported to another hospital some 60 miles away, as we live in a very rural area, as this hospital could not help. When I arrived at the new hospital, the orthopedic surgeon there immediately began to operate. As soon as he opened up my thigh, (they had been measuring the spreading of the dark discoloration at one inch an hour), he decided that he could do no more for me there. I was then transported by Mercy Flight to Seattle's Harborview Hospital. I remember very little about this whole process, but I do remember that the orthopedic surgeon said to me upon arrival on the helipad, "Mr. Wiley, we're going to try and save your leg, but more importantly, we're going to try and save your life". I could only think that he must have the wrong guy. I know that that morning, on the table, I had passed away. Two prongs of some sort were pounded in to either side of my chest and that was so painful, that it brought me back. I asked the nurse what was she doing, she told me not to worry and yelled at someone to put me under again. I woke up that morning in ICU checked for my leg, which was still there. I commented to the nurse that I still had my leg. Her reply for the next ten mornings was "This could be the day we amputate due to the infection". I had no idea what she was talking about. Ten days later I was out of the ICU and down one floor for close observation with close proximity to the ICU. Four days later I was sent down to the burn clinic for skin grafting. I spent four weeks and four surgeries at Harborview still not knowing what NF was. It was only after I was released and sent home to the care of my loving wife, that I was able to read online how terribly lucky I was to survive. Two years later, I walk with great difficulty, the pain is buried in my knee (what little is left), and in my thigh. I have always been active, so this whole experience has been traumatizing as anyone with NF knows. I try to make light of NF when people ask, by lovingly calling it the "National Enquirer Disease". It's usually gets a nervous laugh but I find that making light of this, makes me feel better. But in my heart and in my dreams, I fear it's comeback. I would not wish this experience upon even my worst enemy. To anyone who lives with this, whether personally, or with a loved one, I wish you luck and I wish you health.